Care for carers

Aims of the project

The project aims to exchange good practices on the prevention of hidden violence perpetrated by women caregivers against Alzheimer elderly women.The expected results are the setting up of agreed guidelines of good practices,the adaptation and translation into three languages of the Italian"Caregiver Manual"and their diffusion at European level which will raise awareness and prevent this problem.It will be reached by disseminating the results of the Daphne(2001)"SécuCités Femmes agées maltraitées";by adapting, comparing among Italy, Sweden and Lithuania,and improving and transferring the good practices of the project"Caregiver" found by the Region Liguria in 2003/04 as local follow up of the same "SécuCité".Main beneficiaries will be elderly women with Alzheimer and all elderly women subjected to Alzheimer risk.Main target groups will be carers and carer's trainers by private and public institutions and NGOs

The project is needed because in the overall ageing of the european society,no self sufficient elderly are increasing and researches have shown that old women represent the 75% of the cases of domestic violence.Alzheimer illness is augmenting among women and it represents a strong, but still underestimated, risk of violence against women.Caregivers are mostly women. Generally most of them are related to the Alzheimer ill old woman.The fault of a specific training and community support increases stress and consequently violent behaviours.This project is needed not only for an exchange of improved good practices and guidelines in issue among the concerned countries, but also to raise awareness on hidden domestic violence against Alzheimer ill elderly women, particularly in Lithuania where there is a major gap among official and unofficial data (6 times more)on the incidence of Alzheimer desease.

The project comparing three different social models (the Northern, the Southern and the enlargment ones) and agreeing common guidelines for the training of trainers of caregivers, through the involvement of the local communities of the concerned countries ( mostly in Lithuania), prevents a growing and still ignored form of violence against Alzheimer elderly women. The guidelines with the adapted and translated "Caregiver Manual" introduce in the 3 concerned countries the principle of training and supporting trainers of caregivers by a new way of networking between public and private local institutions.

Care for carers" and the Daphne programme

Paragraph 118 of the UN Peking Platform for Action Project (1995), supported by the Member States of the European Union, states that violence against women is an expression of the historically unequal power relations between men and women, which have led to domination over and discrimination against women by men and the prevention of women's full advancement.

Article 2 and 3 of the Amsterdam Treaty (1997) specifies that equality between men and women is one of the fundamental objectives of the European Union. Article 13 of the same treaty expressly forbids sexual discrimination. These articles provide a legal basis for broad action at EU level to achieve equality between men and women and to combat discrimination.

While there are no explicit legal provisions against violence, following the adoption of the Convention on the Elimination of all Types of Violence against Women (CEDAW, 1979), the Convention on the Rights of the Child (1989), the Stockholm Declaration and the Agenda for Action against the commercial sexual exploitation of children (1996) and the Peking Platform for Action and in early anticipation of the planned European Year against Violence (1999) the Daphne initiative was launched by the commission in 1997 aimed at promoting actions to prevent and combat violence against women and children.

This initiative has highlighted the many different aspects of a complicated picture of violence and focused the attention of institutions and civil society on this huge and widespread phenomenon and the fight to eliminate it.

Since then a number of EU presidencies have prioritised the problem of violence against women and it has been the subject of international conferences. During the Portuguese Presidency a Declaration was adopted in May, 2000 in Lisbon which called on the Council, the Commission and Member States to: "take the solemn commitment to combat all forms of violence against women, through the adoption of legal, administrative and other provisions in order to achieve the eradication of violence against women".

This legal and political background combined with the need to explore in greater depth and raise awareness about different forms of violence against women and its root causes and to spread the good practices implemented by the Member states, led the European Parliament and the Council on the 24th January, 2000 to adopt a programme of Community action for preventative measures to combat violence.

Within this framework, the project "Care for Carers", financed by the Daphne Programme and supported by the European Commission has made it possible for the creation of a new and adapted version of the first Italian manual for training and supporting trainers of caregivers, which was published by ISTISS in 2004 with the help of the Ligurian Region Social Affairs Department. The Italian version of the manual proved to be an effective tool for preventing hidden violence and abuse against the frail elderly at a local level. The purpose of this new version of the handbook, which focuses on the gender dimension of caregiving and illustrates some good practices which were discussed during the meetings which took place in Italy, Lithuania and Sweden, is to contribute to the prevention of hidden violence perpetrated by female caregivers on elderly women with Alzheimers and to the development of good practices in the care of the elderly in European countries

Chapter I: The risks and the first symptoms

Signora Francesca was an attractive 75 year old woman. Her hair was cut very short and she was always tanned because she loved to sit outside on the benches in the sun. She was always smiling and full of life. She had no relatives and her income was so low that she was eligible for a small monthly supplement from Social Services (still not quite enough to meet all her needs).... She spoke to me of her home which was in the Molo area, as if it were a palace. After several interviews in the office I can remember even today, many years later, the day I went to visit her at her home. The image that I had from her description did not correspond at all with what I actually saw that day, the house was almost completely bare, small and very humble. There was however one window that overlooked the port and the sea could be glimpsed in the distance. Her home for her was a fantastic blessing, absolute and inalienable!

Anna Maria Vallarino

Politiche sociali per La domiciliarità in Costanzi C., Gazzola A. (a cura di) (2001), A casa propria. Le condizioni abitative degli anziani nel centro storico genovese, Milano, F.Angeli

My mom used to work as a teacher in primary school for all her life. She was respectable teacher - the pupil and colleagues loved her very much. Nevertheless, the work was not easy and the workload and nervous strain was huge indeed. Mom continued to work in the school even after she was retired.

While she grew older, she started to face some health problems. Firstly, she began to feel pain in her heart, and after some time doctors diagnosed her having Parkinson's disease. However, this was only the beginning of all the troubles.

Time went on, and my mom became more and more anxious, nervous and angry day after day. She claimed that she was dying and that I ignored her. This was obviously not true. I took care as much as I could. She was staying at home, and I had to go to work. This was very stressful and tiring. But even more tiring was the thing, that she was convinced I do not pay enough attention to her. This hurt me a lot, because I knew it was opposite. Therefore, I tried to argue with my mom and to convince her, that she's wrong - I did care about her, and I put many efforts on that. I was in a very tensed situation.

Mom used to call to my office and tell my secretary that she was dying and asked me to come. I used to hurry back home to help her, but when I stepped into her house, it usually emerged, that she was alright and she was not dying and, what was most strange, - she claimed she couldn't remember that she called to my office. However, as long as I tried to prove her that she did, she got even angrier.

Other times, she used to claim, that she's starving, that she has nothing to eat and I don't take care of her. I felt shocked and hurt about these accusations, because her refrigerator was always full and I used to bring her food and to prepare meals everyday.

Back those days, I couldn't realize that this was the beginning of the dementia. I had no knowledge about this disease, no knowledge about how to take care about the ill people. And so, I used to blame myself for all what was happening. I felt so bad; sometimes it seemed to me, that she's doing all this deliberately. Now I know that it was the Alzheimer's disease, which made her act like that. Now I do not wonder, when she tells me stories from her long-ago past but cannot remember what happened that morning.

Now, after taking some time to analyze the main principles of care about the Alzheimer-ill persons, I realized that I should be more understanding and tolerant to what my mom's saying. So now, when she asks me who takes care of my little children, I do not start to argue that they're both grown-up and that they work and study in other countries. I just tell her, that the kids are in the kindergarten and she feels comfortable and happy with my answer.

I am sure that community support for relatives who take care of their dementia-ill family members is essential; they must have an opportunity to be trained how to deal with this illness and how to treat their relatives so that both of them could feel good.

(A caregiver story by Mrs. Liuda from Kaunas, Lithuania)

What do caregivers need to know?

Understanding the disease

Greater life expectancy has led to a major increase in the incidence of dementia. Alzheimer's disease is the cause of half of all cases of dementia. The disease usually begins with cognitive problems, which are observed in normal everyday activities (for example, not being able to knot a tie or button a shirt) and with behavioural disturbances, such as depression and apathy. It begins quite insidiously and is characterised by a slow and gradual progression of symptoms.

Research has shown that in the initial stages there are structural changes in a particular area of the brain called the hippocampus and symptoms are easy to miss. The changes extend gradually over the surrounding area and it is only after several years that other areas of the brain are affected (the temporal lobe and part of the frontal lobe). This is the stage when mild cognitive disturbances and memory loss appear. This condition can remain stable for many years or forever, while in some people it can progress to dementia.

The first stage of the disease, therefore, can develop without particular symptoms or signs being apparent, so when they do emerge and a clinical diagnosis is made, the disease can have been present for some time.

Even when a clinical diagnosis is made, the course of the disease cannot be clearly predicted. It is important to arrive at a diagnosis as soon as possible, particularly because of the progressive nature of the disease and the fact that it can last for a very long time and so appropriate treatment can be started as soon as possible.

Little is known about what causes the disease and so it is difficult to find ways of preventing it. Statistical analysis of diagnosed cases is inadequate and links between cause and effect cannot be proved.

Temporal phases of the disease can be identified, depending on the gravity with which the disease presents: mild, intermediate, serious and terminal. At each stage of the disease the problems of both the patient and the caregiver change. The needs of both the patient and the caregiver need to be reassessed throughout the course of the disease.

The social effects of the disease for the elderly person and the caregiver

It is not just a disease

People who become ill can suffer a sort of separation from society. They stay at home much more and their relationship with their environment changes. The caregiver also runs the risk of being separated from society, because they have to give up commitments, cancel appointments and so on. In some cases they may even have to give up work temporarily or take holidays in order to be able to care for the patient.

In general, when someone falls ill they get better. This is not always the case with the elderly and even less so when Alzheimer's disease is diagnosed. In these situations the outlook is gloomier:

a.      The elderly person is less likely to have significant relationships with other people, so when they become ill it is easy for them to find themselves alone and isolated, cut off from society.

b.     A patient with Alzheimer's does not get better and can develop other illnesses. This results in a loss of autonomy and they become less able to carry out everyday activities on their own.

c.     A person who is ill needs help. The amount of help needed will gradually increase. The separation and isolation caused by this can last for a long time and can affect both the patient and the family member who is caring for them.

The task  of the family

The family is involved

Situations caused by the disease vary from person to person, as do the ways in which families deal with the problem of caregiving. The family should think carefully about whether they are able to take on the task of caregiving. They will need to consider how it will affect them materially and about how tired they may feel and also take into consideration psychological aspects such as fear, anxiety and what they may have to give up. There will be many things to think about such as how serious the loss of autonomy is and how the elderly person and the family deal with it, what sort of relationship exists between the carer and the care-recipient, how effective the support network is, whether social services or privately arranged help are involved, the quality of the relationships between the family and these services and so on.

Each individual situation is different. Some elderly spouses care for their spouse with Alzheimer's with great affection and efficiency, but they are also able to protect themselves from physical exhaustion and depression, by accepting the support of their children or paying for help, even though it may only be part time.

Conversely, there are adults in their 50s who are destined to "burn themselves out" in the course of caring for one of their parents, because they are either incapable or unwilling to ask for help and cannot find the right balance between managing their own life and caring for their relative.

If the caregiver is too overprotective and tries to have too much control over the person's daily activities, they can lose their autonomy much sooner than is necessary. It also uses up too much of their energy, which could be damaging in the long run.

The caregiver should always be aware about what is going on and learn to take nothing for granted.

A look at Protection of Rights

Take action early

As we said before, when discussing the protection of rights, it should be remembered that, in this initial stage of the disease, the patient is still in possession of all their mental faculties and so it is not possible to resort to measures that the law provides for when dementia becomes more serious. But the problem should not be underestimated, as the disease could be considered as being "advanced" right from the beginning. The person needs to be prepared and the disease should be discussed with them. Being as tactful and sensitive as possible certain precautions need to be taken:

Be aware of the risks

  • To safeguard whatever assets they might have, (e.g. signing for them in the bank);
  • Recognise that there may be risks attached to driving a car;
  • To prepare them for the presence of other people in the home (paid help or other family members) if this becomes necessary and how it will be financed;
  • To involve them in contacting external services and organisations to avoid the risk of isolation.
  • The family doctor can be of great help to the caregiver, in convincing the patient to choose someone they trust, who can work exclusively in their interests. They could be appointed a proxy [appointee](to deal with their bank and pension for example) or be granted an actual power of attorney with the scope of renewing rental agreements, drawing up new ones, selling the house if necessary when large sums of money are required and so on.
  • In this case a solicitor will need to be appointed who can request a medical-legal opinion about the mental capacity of the patient and then advise on the best course of action.

Who are the best people to talk to?

Talk to the doctor

Everybody hopes that they and people they know will have the satisfaction of growing old gracefully. But when a family member shows signs of illness, these hopes have to be set aside and the situation should be dealt with as speedily as possible. It is wise not to be under any illusion about the possible outcome of the illness but at the same time not create any undue alarm. You need to ask yourself first of all how willing you are to care for the person who is ill. It will require effort but can bring rewards. You also need to think about help that might be available.

Talk to other family members

It is worth talking to the GP first in order to find the best possible care programme that will use appropriate treatment for maintaining good health and working out how much assistance will be required to guarantee this. Finally, it is worth talking to any other family members and close friends, to discuss any current problems and also to discuss possible problems that could arise in the future.

What to do?

Do not ignore the symptoms

Watch out for symptoms

First of all the doctor's advice should be followed. In the early stages, there could be an attempt on the part of the patient, to "play down" what is happening. Family members may not attach any significance to the warning "signs" of the disease, either putting them down to being part of the normal ageing process or to being depressed or being the normal "forgetfulness" that goes with old age.

For the patient the first problems appear as they carry out normal everyday activities in their home but it is very important that they continue with these activities for as long as possible.

Whoever is assisting them should observe them discreetly without giving the impression that they are being tested or assessed. It can be difficult to strike a balance between letting them get on with things, with the added risk of some accident befalling them, and the temptation to take over completely, without taking into account any capability they might still have.

The caregiver may also have to deal with feelings of depression that could result from observing the gradual decline of the person they are caring for.

Deciding to become a carer

In this stage it is important to think about who is going to take care of the demented person, in the medium to long term, avoiding oversimplifying the situation by trusting in instinctive choices or refusing to consider some people who might be able to help.

Generally, the first symptoms appear when a family member or a privately arranged care assistant or social services care worker is already involved in giving some support. Whatever the case, it is usually the relative who is closest to the person who will have to take on the responsibility for caregiving. In cases where there are no relatives involved the same assistant (social services, caregiver) can take on this responsibility, but they should take appropriate precautions, so as not to be accused or suspected of any sort of fraudulent activity. They should keep an accurate account of money drawn out and spent, keeping receipts and so on. In this early stage it is a good idea to involve the person themselves, asking for authorisation to spend any money, also as a sign of respect for their rights and encouraging them to keep an interest in things (using money, being able to choose, remembering engagements etc.).

Think about the commitment of "caregiving"

If you decide not to give in to the temptation to walk away from the problem then the situation will need to be thought about very carefully, particularly the fact that the commitment can last for many years.

It will change your life style

The situation needs to be "managed" carefully to avoid feeling overwhelmed. In order to make an accurate evaluation of the situation and the risks that the caregiver could encounter, they should draw up a plan of their own life style, and highlight important aspects of it that they do not want to give up and those that are less important. Life style naturally includes relationships with other people, habits, pleasures, hobbies, work and social commitments and so on.

This will be the basis for deciding, with the agreement of social services, how much time should be dedicated to caring for and helping the elderly person.

Caregiving is a complex and arduous commitment. It is a good idea therefore to think about getting help early on, without being unnecessarily alarmist, but also so as to not be taken by surprise.

These aspects deserve some considerations:

The practical dimension(caring, giving assistance, actual physical care, carrying out care unusual in a relationship between adults, creating well-being, containing/controlling, carrying out different tasks to support the life of another, liasing with other family members, workers, services, with the resources available in the area, etc.)

The relational dimension(feeling close to a person who is dependent on you, creating a new sort of bond with, being aware of the needs of, building a helping relationship, entering into the private world of the other, collaboration, managing aggression, conflict, providing a link between the patient and those who do not know about the disease, experiencing role reversal, such as children caring for their parents etc.).

The emotional dimension(being worried, anxious, having their well-being at heart, feeling affection for, tenderness, having positive and negative feelings, having feelings of aggression, delusion, being overcome by feelings of fear for yourself, not recognising loved ones)

The ethical dimension(feeling responsible, feeling burdened with, respecting the values of, safeguarding your own values/worth etc.).

Practical suggestions for recognizing, preventing and combating stress

Early recognition that we are suffering from excessive fatigue and emotional tension (which indicates stress) can help us take preventative action. We need to learn how to spot the telltale symptoms. The main things that the caregiver should know can be summed up as follows:

Recognizing the alarm bells

Recognising symptoms in good time can help you to take action to deal with the new situation. Some of the most common signs are:

  • Shortness of breath
  • Lump in the throat
  • Stomach cramps
  • Chest pain
  • Migraine
  • Digestive disturbances
  • Drinking too much alcohol
  • Smoking too much
  • Lack of patience
  • Wanting to run away from everything
  • Insomnia

Dealing with stress in a positive way in order to regain calm

When you feel frustrated and confused, and realise that you are becoming excessively worried and stressed, you should get into the habit of taking time to think about the situation and your immediate feelings in a more objective way, so as to find the best way of keeping the situation under control. One common ploy is to count to ten and take a deep breath. Leaving the room or the situation that is causing tension for a short time can help you stay under control and stop you acting impulsively.

Some people find it useful to call a friend, sing, listen to music, have a relaxing bath or do something enjoyable. Try different strategies to see which works best for you and the person you are caring for.

It is also important to prevent these critical moments. Try practising relaxing techniques on a regular basis. These are often not taken seriously or are thought of as being merely a fad, but they can help you deal with frustrating situations. If possible dedicate 10 minutes a day to doing some relaxing exercises, after you have discovered which ones are of benefit.

Changing the way you think can reduce stress

The way you think affects your state of mind. It is obvious that feelings of frustration arise from the objective way you view the situation you are experiencing. When analysing how you respond to frustrating situations, you will often discover underlying negative thoughts that prevent you from looking at your situation objectively or of finding a better way of dealing with it. Here are some examples of dysfunctional ways of thinking which are fairly widespread among caregivers. For each example we propose a better way of reacting that you could adopt and could prevent feelings of frustration.

Over generalising

This happens when you take a single negative situation or a characteristic and apply it to everything. For example you are ready to take the elderly person to the doctor when you discover that the battery is flat in the car. You say: "This is always happening, everything always goes wrong!"

A different and more positive way to react could be: "This doesn't always happen. The car doesn't usually give me any problem, but sometimes it does".

Playing down the positive aspects

You undervalue the positive aspects of the circumstances and your own good points. For example, you think "I could do more" or " Anybody could do what I am doing". A more positive approach could be to say instead "I'm not always perfect, but I do a lot, I do it well and I am trying to be useful".

Jumping to conclusions

You reach conclusions without having explored every avenue, for example imagining people have negative opinions about you. You wait for a telephone call from a friend and they do not call and you think it means that they do not want to talk to you or they are cross with you for some reason; but it could simply be that they had a lot to do or they never received your message.

Thought inspired by a sense of duty

You try to motivate yourself by using expressions like: "I must call my mother more often" or "I shouldn't go to the cinema because my mother might need me". What you think you ought to do clashes with what you want to do, so you end up feeling guilty, depressed or frustrated. It is better to think that you would like to see a film and that having a break from caring could be positive and so you ask a neighbour or a friend to keep an eye on your mother.

Labelling

You make assumptions about yourself or other people based on one particular characteristic or event. For example you put off doing the washing and think, "I'm really lazy", while you could think, "sometimes I don't do as much as I could, but that doesn't mean I'm lazy. I often work hard and do as best as I can, I need a break every now and again".

Personalisation/blame

You take responsibility for a negative event that was out of your control. For example you blame yourself when the person you are caring for has to go into hospital or a care home. You should think instead " My mother's condition has deteriorated and I can't look after her any more. It's because of that and not because I don't want to".

Learn how to communicate in an assertive way

Communicating at the right moment can reduce frustration, allowing you to express yourself and helping others to understand your limits and your needs. Assertive communication is very different from passive communication (which implies that you are suppressing your needs and desires to avoid conflict with others). This can seem the easy way out, but in the long run the result could be that people will think they can make you do whatever they want. Behaving aggressively, on the other hand, and forcing your needs and desires on to other people, can make them feel defensive and behave in an uncooperative manner. When you communicate in an assertive way, you express your needs and at the same time respect those of other people. Discussions can be conducted in a manner that respects people's different positions and needs.

Do not be afraid of using positive statements such as: "I feel that I can't go on, but I know that I can count on you because I need to have a break".

Try not to be too timid or unassertive and combat feelings of inadequacy in your role as caregiver.

Learn how to ask for help

You cannot take on the whole burden of caregiving yourself and it is vital that you ask for and accept help. Other people may not realise that you need their support if you do not explain the situation to them and ask for it. Do not wait until you are at the end of your tether before realising that you need to accept help and remember that people like to feel useful and are pleased when they are asked to help someone.

Learn how to say NO when you are asked to do something that you cannot do! Your resources are not unlimited.

Take care of yourself to prevent feelings of frustration

When you are taking care of someone else it is easy to forget about yourself, something that is very important in preventing frustration andburnout. In the first place allow time for resting, socialising and entertainment. You must allow yourself breaks from caring to avoid becoming too anxious or depressed. There is always a danger of this when there is a consistent level of stress. You should do this regularly.

Pay attention to your well being by eating a healthy diet, having a good night's sleep and taking care of your health. Finally, share your feelings with someone, whether it is a counsellor, a priest, a support group or another caregiver in a similar situation to yours. This could help enormously in reducing stress.

What are the consequences?

What are the consequences of not taking the typical signs of the early stages of the disease seriously?

The home is important

For the caregiver this attitude can mask the fear of having to face up to a difficult, exhausting and demanding period and so there is a desire to postpone it. This results in a refusal to think about the problem and how it will evolve and consequently not being adequately prepared to deal with it. In these cases the caregiver can unwittingly offer far too much help and think that the person will get better. This is an illusion destined to collapse when faced with the inevitable deterioration in the disease later on.

Underestimating the disease delays the diagnosis, and as a consequence treatment cannot be started at the right time and hinders an accurate evaluation of the person's life, including their need to live in a safe home environment. When discussing the possible changes and suitable improvements in the home, it is useful to recall the importance the home assumes for all of us, particularly for the elderly who go out far less.

Whoever has worked with the elderly has many stories to tell on this subject. They see their home completely differently from other people and see and experience things differently from someone with a more objective stance. They no longer notice what things are really like because what counts for them is what has gone before and the history their home and possessions have absorbed over the years is irreplaceable.

It is easy to imagine how traumatic it can be for many elderly people to move to an environment that although it might be safer and easier to manage has neither history nor meaning.

Adapting the house

Safety at home reduces or eliminates the risk of domestic accidents. The home, however, should be changed as little as possible so that the person can continue to feel comfortable. Living at home means being able to recover memories for as long as possible and helps towards maintaining identity. There is no better place than someone's home, which is full of the familiar objects, odours and memories that have been part of their private existence for years. This means finding a way of living alongside a person, right from the early stages of the disease, which will make life more gratifying both for the elderly person and the caregiver.

What treatment is possible?

So far there is no preventative drug treatment for Alzheimer's disease, so in the early stages of the disease when it is not clinically well defined, there is a lack of scientific evidence that justifies starting treatment, although in some cases it is used. Drugs are usually prescribed that prevent an enzyme called acetycholinestarase from breaking down acetycholine in the brain. Increased levels of acetycholine lead to increased communication between nerve cells.

Drugs may not be the only treatment

Treatment should be started as soon as possible. It is hoped that drugs will soon be available such as gamma-secretase inhibitors which prevent the deposit of beta-amyloid in the brain, typical in Alzheimer's.

Some non-phamacological treatments are in the process of being verified. One of these is Reality Orientation, which has had some degree of success.

This therapy is designed to improve memory and reduce confusion. It can be carried out at home and involves them being surrounded by familiar objects (verbal, visual, written and musical) that can be used to stimulate their memory. Psychological support of the demented person and the caregiver in this period is very important.

What should the caregiver do?

Evaluate the situation

The key word in this stage is "be informed"; make an assessment of commitments, risks, assistance available and your own strengths and at the same time be informed about how the disease could progress. Think about the most important things in your own life that you want to carry on doing and those, which are less important, that may have to be given up at some point. There is a risk of becoming isolated and thinking that the problem is yours alone. Be prepared to talk to other people. By cultivating an open attitude towards the outside world it will become easier to deal with criticism and obstacles that will inevitably occur. This is also true in the sphere of protection of rights. General precautions can be adopted, following the indications and the suggestions laid out in the previous pages. More specific protection, provided for in the appropriate laws, can be called upon later on.

Chapter II: The first problems

Who are the best people to talk to?

General practitioner

If you think that a relative is showing the first symptoms of Alzheimer's disease or a form of dementia, the first step is to consult the general practitioner. It is important that a diagnosis is reached as soon as possible in order to commence suitable treatment. The doctor, with the family's consent, can also refer the patient to a specialist or a dementia centre.

Experts in the matter (citizen's organisations, relatives associations etc.)

In this stage organisations for the families of people with Alzheimer's disease can provide advice and practical help. These organisations try to help people confronting Alzheimer's disease. Among other things they provide information about the disease, invalidity benefit, what services are on offer and how best to obtain recognition.

Support groups

Alzheimer's Associations

Alzheimer's associations often organise support groups, which can be a great help to the caregiver. These groups are so called because they are for people who recognise that they have a problem, are trying to deal with it in a positive way and hope to be able to do this through the support of other people who share the same problem. By participating in the group people offer each other mutual support. As it is family members who provide the most important support for the demented person, when they receive emotional support the demented person also benefits indirectly. Anybody can participate in the group. If a doctor, a social worker or a member of the group suggests joining a group, it is a good idea to obtain all the available information and take some time to think about it before deciding to join.

Support groups can be helpful in different ways. Caregivers have the opportunity to exchange information and knowledge, to express emotions and feelings, to recount their own experiences and share problems, to meet on common ground with other people, be noticed by other people and make new friendships, and to face up to difficult decisions without feeling they are on their own (day centre placements, residential care etc.)

In order to make the group work the participants are asked to fulfil certain conditions such as demonstrating their motivation, attending regularly, being open, trusting in others, being willing to help and to accept help, not being judgmental, showing reciprocal respect, respecting other people's privacy and punctuality.

These are just a few factors that form a list of "rules" that everybody should try hard to respect. These are very simple rules concerning groups and relationships within groups:

  • Being committed to the group
  • Being punctual and respecting the time it finishes
  • If possible let someone know if you are unable to attend
  • Showing respect for whoever is talking by listening quietly
  • Respecting your own turn when you are asked to give your thoughts on something by joining in
  • Absolute secrecy about what is discussed in the meetings.

A general and important objective is that of optimising the capacity for self-protection by the participants. We talk of optimising the capacity for self- protection from stress, from becoming excessively involved; to try out strategies that can defuse some family conflicts; to feel able to ask for help from others (relatives, friends, workers). The whole group can offer support in these decisions, even if you then have to find the means and the time to carry them out on your own.

The group leader's (sometimes there are two group leaders who take turns at running the group) role is to help the group members communicate in a mutually useful and productive way. They divert attention away from people who tend to dominate the group and encourage the more timid members to join in. The group leader should not be judgemental and is not there to offer advice or analysis. Apart from being someone who is well versed in the problems that the group members are discussing, the group leader is there to ensure they work well as a group and that they contribute and receive as much as possible from the experience.

As for the size of the group, the writer believes that a well functioning group should not number any more that 12-13 people and should not be less than 7-8. These are numbers that are not too large to frighten people who are not used to speaking in public or too small to reduce the rich array of experiences being brought to the group for discussion.

The group can decide how long they want to meet for whilst being flexible about any changes. Some groups decide to meet 10-12 times on a 3-4 weekly basis and the group members remain unchanged. Other groups carry on for years accepting new members as time passes. For a group coming "to an end" time should be taken to evaluate its experiences before it disbands.

Choosing to "take care of someone": becoming a caregiver

The vignettes below, taken from case studies materials discussed by the staff of the dementia teams in Sweden, show how family caregivers can actually be supportive and naturally able to "do the right thing".

Case description 1

An old married couple in their eighties and the husband is diagnosed to suffer from dementia.

The wife retells a situation when she and her husband were at home in their apartment and when the husband suddenly says: "Well, now you have to go because my wife will be home any minute now". The wife then replies: "But I am your wife". With a considerate smile her husband says; "that's very kind of you, but you are a bit older than my wife". The wife tries to convince her spouse that she really is his wife, but when this does not work the wife resolves the situation by leaving from home. She leaves the apartment, but stays in the staircase. From there she calls her husband from her mobile phone and says "Hello it is me" and the husband answers "but where are you? Are you not coming home soon?" The wife then returns to the apartment and the situation is resolved.

Action;Distraction and creativity, and not to argue are the correct and most effective solution in this case.

Explanation;The husband believed himself to be and look much younger than he really was and therefore, at that very moment, so should also his wife. Temporary confusion.

The wife retells another situation where her spouse wants to go to work and on a business trip. The husband who used to work with sales used to travel a lot on different occasions. The husband packs his bags, puts on his coat and calls for a taxi. The wife tries to distract him, but fails to convince him not to go. The taxi arrives and the husband gets into the car, which drives off. Some time after this the wife receives a call from a hotel in Malmö. The hotel staff tells her that her husband wants to check into the hotel. However, the personnel have sensed that something is wrong and has therefore asked the man for his home phone number. The wife asks the personnel to order a taxi to go to their home address. Thereafter she goes outside to meet with the taxi. Once the taxi arrives the wife is already there, but her husband is annoyed and angry and does not want to go home. He walks off towards the city centre, and his wife walks behind him, keeping a distance. As the husband after a while reaches a lively and rather trafficked crossing with traffic lights he gets a bit insecure, he stops and looks worriedly around. At that point his wife approaches him in order to help him out. The husband appreciates the help she offers and as a result he calms down. Together they order a taxi and go back to their home.

Action;Attempt to distraction, does not interfere or argue. Tries to be a calm and comforting support. In this situation the right solution is to be calm and supportive and not argue with the individual's wrongly perceived idea of the reality.

Explanation;As in the previous case, the husband experiences a temporal discrepancy and believes himself to be in a younger age, and still working, than he really is.

Case description 2

Married couple where the wife is thought to be suffering from early stages of dementia and where their daughter is being very supportive

I meet the couple when visiting them in their home together with the daughter and a home care inspector. The wife is pending and suspicious of our visit and cannot understand for what reason we are there. Against her will the wife is participating in a dementia investigation, but through the persuasiveness of her children she has visited the doctor, who made a scan of her brain (although she refused them to do a measure of her blood flow). A specialist team has visited her at home and there they performed tests and evaluated the patient's results. There is a suspicion that the patient (the wife) is suffering from Alzheimer's disease, but they are still waiting for the final results, x-rays, and test results from the specialist team and thereafter put in the right medicine that will slow down the development of the disease.

The husband has, to his daughter and their other children, shown signs of fatigue and to some extent also irritation about his wife not being able to do the things she used to and that she, simultaneously, does not accept any help.

The household chores are more and more becoming the husband's responsibility. Something that he is not used to do and which he experience as difficult practically due to his Parkinson's disease. The Parkinson disease appeared years ago, and now he is having troubles with walking, with his fine motor abilities, and with spontaneous movements. At times he experiences speech difficulties and as a result needs to take his time.

The couple lives in a house with three floors, and where the stairs can be quite troublesome.

The husband is now turning to the municipality for help but the wife is reluctant, as she "believes" that she is doing the daily chores in the same way as before. These situations are discussed quite a lot between the two and thus adds up to some tension between them, and sometimes also towards the children.

The couple has always had dogs, which the wife especially had an interest in and still does. The last dog died about a year ago. It is still missed to a great deal, and especially the long walks. Because of this the daughter has brought her puppy to the couple and let it stay there for a day or so. During its stay (the puppy) the mother (wife) has given the little dog food every now and again and sometimes also inappropriate food. A result of her not remembering.

The situation has become such that the daughter cannot leave the dog with the couple and as a result the mother becomes angry and upset. She calls her daughter to ask about her dog (believing it is hers and not her daughters) and accuses her daughter of taking the dog from her. This situation also becomes the husband's and it causes discussions between the two and delusional states, turning day and night etc.

The daughter has signed up for and joined a family education and been there a couple of times. She has gained an increased knowledge about dementia and a greater understanding for its development. The daughter has informed her father about communication, which has resulted in a situation that is calmer, but not entirely.

The investigation is yet to be ready and evaluated and the appropriate medicine is to be prescribed. After this, the dementia team and other efforts on behalf of the municipality can be granted.

Measures:Dementia investigation. Educational measures for family members- support of family, home care services, possibly a specialist dementia team.

Explanation:Not yet a diagnosis of dementia. Not started medical treatment. The family has no previous knowledge of, or understanding for dementia diseases. No home care services or dementia team was there initially.

Apart from the considerable commitment that caregiving entails, the financial burden involved and worries about the future, the caregiver will also have to deal with a complex variety of problems caused by:

  • problems with social life (feeling embarrassed and shutting yourself away to avoid socialising),
  • difficulties at work (taking time off work to care for a relative or inevitably "doing less"),
  • the so called "loss of self" (the needs of the patient come before your own needs and desires).

Evaluate the difficulties

It is inevitable that when confronted by all this stress, the caregiver may suffer from anxiety and depression and even poor physical health. Something that should be discussed with the professionals (doctors, social workers, psychologists) is what lies behind the decision to care for a family member. What makes someone put themselves on the front line? People make choices in life and take on commitments for different reasons.

Be aware why you have made your choice

It can be because of affection, solidarity, gratitude, a desire to protect your own family member, a strong belief in marriage vows or the filial bond or feeling you owe something. It can be pleasure in the act of caring and protection, it can be not being able to say no, it can be a profound sense of duty or traditional "designation" (the daughter has to look after her parents) or accepting that you are the only one who can help, it can be fear of social judgement or the need to be accepted, a need for revenge and the opportunity to express "power" (taking decisions for someone else). You may be convinced that you are the only one who can do it or there can be competition from other family members. You may be hoping for some form of reconciliation or it can be a pretext for escaping problems within your own family (marital problems, difficult children).

It is probable that when assuming the role of caregiver motivations such as these will be involved, but there are many more not mentioned here. The motivation can be linked partly to a previous or ongoing relationship with the person in need of assistance and also to relationships with family or other relatives.

There is no definitive answer, because it is subjective, but our lives are entwined with our family's history and often in a way that is "secret" or at best ill defined. There is no doubt that the decision to take on the commitment of caring for a family member is often because of something that has happened in your own life or between you and the person you will care for.

What to do?

First of all an accurate diagnosis

Do not underestimate the situation

At this stage an accurate diagnosis of the disease and obtaining as much information about it as possible about it is essential. It has already been said that there is a very broad spectrum of cognitive symptoms, so in the early stage, it is important that the superior cerebral functions are thoroughly investigated. Specific tests can test memory, language, attention span, reasoning etc, which will help to provide a complete picture of the person's cognitive state. Unfortunately, the test is rather long (about 2 hours) and tiring, but it is a very useful test for the medical team who will care for the patient and can trace the progress of the disease. It is also useful to the relatives as it can help them adopt the best strategies for caring for the patient.

If someone has an attention deficit, it is a good idea to allow them to carry out simple tasks, giving them one at a time, so as not to engender a sense of frustration.

A diagnosis is needed

If the predominant deficit is memory the person can be encouraged to use aids that could help their memory (notes, diaries etc). Try not to get annoyed when they repeat the same actions many times or ask the same questions.

Depression sometimes precedes the disease and any cognitive deficit, but is often present in both the first and the intermediate stage of the disease. It can be resistant to medical treatment.

If signs of depression are present it is important to intervene immediately because repercussions on the cognitive symptoms can be significant. If it is a true depression, the cognitive functions can deteriorate more rapidly.

If it is not treated the prognosis for the disease is worse.

Be observant for different types of behaviour

Various changes in behaviour can be manifested at this stage. Caregivers should adapt their own behaviour to the situations that are slowly evolving.

Talk about practical issues with the patient

This is the stage in which the demented person needs reassurance. Avoid telling them to "do it themselves" and work out a care plan with the help of the doctor and social services. This attitude will help the patient be involved too. Talk to them, without being alarmist, about the problems that the disease will bring, particularly in order to begin suitable medical treatment.

Try not to give them tasks that are too difficult to perform, and avoid pointing out their mistakes, as this will increase their sense of impotence and can make them feel more depressed.

It can be helpful to spend time together doing pleasant activities that are also stimulating (for example, easy crossword puzzles, listening to music, watching a film with a simple plot). The person could be encouraged to attend a day centre, somewhere where it is not only possible to meet new people but also allows the caregiver to have valuable time to themselves. These centres provide stimulating activities, different support therapies, sporting activities - all carried out by trained staff.

A calm home environment and good and affectionate family relations are an excellent way of making the patient feel more at ease.

Driving a car

Driving a car

The reduction in working memory, as well as the progressive spatial-temporal disorientation and the loss of practical skills makes driving a car or motorbike dangerous. The person will need to be asked in good time not to drive, unless accompanied. Care must be taken not to hurt their feelings (remember the risk of depression in this stage). It is a good idea to use excuses such as the car is old and has to go into the garage or it is costing too much to run etc. It can be difficult to convince them that it would be better to stop driving. However, if they insist on driving thereby putting both themselves and others at risk steps should be taken to have their driving licence revoked.

Travelling and moving around

Travelling and going out

A person who has fallen ill often stops doing as much, justifying these changes with different excuses (not finding activities very interesting, for example).

It is important for the caregiver to carefully evaluate the episodes where they complain of feeling disorientated, express a fear of getting lost, say they do not recognise a place that used to be very familiar and so on. It is important to understand whether there is any real risk linked to going out, so as not to curtail this at the first sign of any difficulty. The caregiver should encourage the person not to become isolated and try and prevent them from lapsing into a state of apathy from which it is always difficult to emerge.

Using public transport

There are risks involved in using public transport too not only because of spatial temporal disorientation but also because of the difficulty in remembering things like the number of the bus and the route it takes and also for their own personal safety. Vigilance is essential as in the previous example.

Financial arrangements and personal safety

Financial arrangements

The decline in cognitive efficiency and physical strength exposes the patient to the danger of being taken advantage of in various ways. It is vital that the caregiver controls the way more important financial transactions are carried out (making sure the bills are paid regularly).

Smoking and alcohol

Alcohol and cigarettes

The gradual loss of memory, associated with the inability to organise events, can lead to alcohol and tobacco abuse and even overeating. The patient's behaviour should be observed in order to be able to adopt eventual strategies to avoid the excessive use of these substances.

Nutrition

Eating and preparing food

There is no one particular prescribed diet for people suffering from dementia and Alzheimer's disease. Demented people can eat what they like, unless there are other diseases present such as diabetes, which requires a special diet. It is a good idea to always tell the person which meal of the day they are eating and to allow them to choose what they want to eat. Meals and food should be an enjoyable part of the day and as far as possible the menu should be varied and the wishes of the person listened to.

Meal times will become increasingly difficult, so you should be prepared to use plastic table cloths, absorbent napkins, glasses and cups that do not tip over. If the patient uses his hands instead of cutlery, it is advisable to serve food that has been cut up small and is easy to swallow. It is better if the main meal is at midday, this should limit any digestive problems in the evening or restlessness during the night. Only offer one course at a time to make sure each one is finished, avoiding overwhelming them with too much choice. Forcing them to choose, as in other areas, can increase confusion and disorientation.

It is very important to pay attention to oral hygiene and ensure teeth are looked after.

Accident prevention in the home

Accidents can happen at home

The problems of living at home have already been mentioned. This subject is examined in greater detail here. The most common injuries caused by accidents at home are cuts and burns.

The caregiver needs to consider all the hazards in the home. They must get into the habit of checking anything that could become a risk factor, just as you would in the first years of a child's life by making their exploration of the world that surrounds them safe. In particular, the ability of the patient to carry out ordinary tasks must be constantly monitored. As they become less competent even ordinary situations can become sources of danger.

Accident prevention in the kitchen

The kitchen is often the riskiest place in the house for the female population. Obviously, activities that involve the preparation of food present potentially dangerous situations.

To prevent the risk of fire avoid having curtains that could billow out near the hob. If there is a current of air, the curtains should not be blown about so that they can reach the flame.

Avoid synthetic clothing (acrylic dressing gowns) and in particular clothes with dangling bits (very wide sleeves, for example) that could come into contact with the flame while handling saucepans on the hob. Synthetic fabrics can catch fire alarmingly quickly. Small fire extinguishers are widely available and it is recommended one is always kept within easy reach in the kitchen.

High risk of fires and burns

Many burns are caused by accidentally knocking over a saucepan containing boiling water: this is often caused by the oven cover, which if it is knocked, falls down on the saucepan and tips it over. The most sensible thing to do is to get rid of it altogether or at least find a way of fixing it to the wall when cooking.

It is very easy to knock a saucepan over if its handle is protruding over the edge of the hob, so it is a good idea to get into the habit of using the gas ring furthest away from the outside and never to leave the handles pointing towards the edge (frying pans etc.) Still on the subject of burns caused by panhandles and suchlike, it is advisable to always use a well- insulated oven glove, particularly when taking something hot out of the oven. If the oven glove is not heat resistant enough it could cause you to drop the article being removed.

To avoid gas leaks, several simple precautions need to be adopted. The first thing is not to leave the gas rings alight when they could be exposed to currents of air that could blow the flame out. If you have to leave the kitchen while you are cooking it is a good idea to put a timer on so as not to forget the gas is on (for example, if the telephone rings or we start doing something else that distracts us from what is going on in the kitchen)

A gas detector can be installed in the kitchen (near the gas boiler if there is one), which will sound an alarm if there is a leak.

It is a good idea to get into the habit of turning off the gas every evening and also when you are not going to use the equipment for some time. If a gas cylinder is used to provide fuel it should not be kept inside the home, but secured outside and protected from the sun.

If there is a smell of gas it is vital not to light a flame or turn a light on to avoid creating a spark. Windows and doors must be opened immediately.

If the kitchen is going to be renovated it is thoroughly recommended that security gas rings are chosen, which are equipped with a device that cuts off the gas if the flame should go out.

In particularly difficult cases, it is worth considering making it impossible for the patient to get into the kitchen (for example, fitting a lock) or deactivating the actual kitchen. If possible, a new one could be installed in a more secure place in another part of the home.

The danger of falling in the bathroom>

Preventing accidents in the bathroom

The risk of falling in the bathroom is greatly increased because of wet floors, soap residue and slippery surfaces.

It is easy to fall both inside the shower and getting out of the bath, so it is advisable to place anti-slip bath mats inside the shower and bath. A bath seat can be placed in the bathtub that will ensure a more comfortable sitting position.

If the person finds it difficult to move grab rails should be fixed to the walls to make it easier to change position in the bath. If the bathroom is very small it is wise not to close the window completely while having a bath or shower because if it gets very steamy it could make them feel faint.

Move or eliminate electrical appliances

The key should be removed from the lock or bolt removed from inside the bathroom door in case the patient feels unwell or forgets how to unlock the door.

All electrical appliances should be removed (hairdryer, radio, razor). They could be used carelessly or come in contact with water, with the risk of electrocution. The bathroom heater should be turned off before having a bath or shower.

Other causes of accidents

Many elderly people's apartments have obsolete electrical wiring, with trailing wires, often with "homemade" systems of socket extensions for lots of plugs that can overheat easily.

Other dangers at home

If this is the case then the electrical system will need a radical overhaul. The trailing wires at least will need dealing with and a power surge protector installed.

If the demented person smokes great care must be taken to try and avoid them falling asleep (in bed or an armchair) with a lit cigarette. Many fires are started like this. Cigarette butts or matches should be checked before they are put in the rubbish so as not to start a fire.

As the patient becomes less mobile moving around at night needs to be made safer as spatial disorientation tends to get worse in the evening. The best solution is to have low wattage lighting in the corridor between the bedroom and the bathroom. If there are electrical sockets along the passage another alternative would be to install lamps that use little electricity or even nightlights.

Help for the protection of rights

The first right of protection is the right to have care. It should be remembered that Alzheimer's is a "disease" and that the patient has the right to be cared for even if they are "incurable".

What are the consequences?

Importance of common sense

In the preceding pages, it has been seen that, even though this is the early stage of the disease, there are many decisions to be taken and a huge commitment to be undertaken. It is also the time when the first important relationship between the patient and the caregiver is established, so it is important to react calmly and sensibly. This means not being too alarmist, which could make the caregiver lavish too much care on the patient and impose pointless limitations on them. Neither should the caregiver be dangerously blasé and minimise the problems and put off asking for any intervention. These are two opposing ways of reacting which risk:

  • Unwittingly creating isolation, which is destined to get worse with the progression of the disease;
  • Cultivating the habit of "doing it on your own", implying a mistrust in the services and other outside agencies that could provide advice and help.

On the practical side, the family member who observes the first signs of the disease and notices changes in the patient's behaviour could be tempted to carry out all the care on their own. The generosity of their feelings, the affectionate bond they have with the patient and their sense of responsibility can all lead them to do this. They believe they can "do it on their own", considering the help that could be obtained from social services will not be enough and distance themselves from care programmes they could benefit from. This attitude can backfire, when the burden of care eventually becomes too much and help from social services and other people becomes essential.

To avoid excesses and warnings

In situations like this society, represented by other people and social services, do not offer much help. Social services tend to draw back or not to intervene, unless they are specifically called to, because in the current culture, commitment from the family or family member is thought to be the viable alternative to intervention from social services.

Social services become involved when there is no family or they find caregiving too much. This competitive logic or reciprocal exclusion is very damaging. It is vital that social services, the family and the caregiver are united in spirit and work together.

What is the possible treatment?

Observe and talk to the doctor

Treatment should be included within a care plan that addresses all aspects of the disease. We have already talked about the risk of depression. The patients can be treated with anti-depressants. There is quite a wide choice, but doctors now prefer to prescribe selective serotonin reuptake inhibitors (SSRIs), which are the latest anti-depressants. These should be prescribed carefully and their effects carefully evaluated. It is best to consult a specialist, particularly because these patients often take more than one type of medication.

Avoid self-care

A second intervention is a psychological one, through supportive consultations and psychotherapeutic techniques, aimed at discovering the cause of the depression and suggesting a course of corrective action. Intervention within social, family and relational contexts is considered very important as they are often causes of or can exacerbate depression, because they are linked to profound experiences of solitude and neglect, which can be physical or a consequence of serious emotional deprivation. Poverty can also contribute to serious depression and make it difficult to recreate a comfortable atmosphere where the patient feels loved and nurtured, but it is not easy to minimise or eliminate poverty. The caregiver and social services particularly should not forget how important these types of intervention are for combating forms of depression and work towards them being put into practice. In Alzheimer's disease both drug treatment and other therapies are used.

Drug treatment

Drug treatment

In recent years drug treatment has followed three trends:

1.     Drugs that stimulate the production of acetycholine in the brain.

2.     Anti-oxidant and anti-inflammatory drugs.

3.     Preventative treatment for the accumulation of beta-amyloid.

Acetycholinesterase inhibitors.Clinical studies demonstrated that nerve cells (neurons) are among the first to be damaged in Alzheimer's disease with the result that levels of acetylcholine fall in the brain. Acetylcholine is a neurotransmitter, a chemical substance which neurons in the brain use to communicate with one another. These drugs do not act on the causes of the disease but on the effects caused by a reduction in the levels of acetylcholine. This is symptomatic therapy (like, for example, drugs for a cough caused by bronchitis) that has a variable effect and depends on the subject. Their effect is temporary, so they are used in the early stages of the disease and not later on where there is the risk that they can cause severe agitation. In cases where there is a favourable response there is an improvement in memory, attention span and concentration which in turn leads to the patient being better able to carry out normal daily activities. In these cases there is also an improvement in behavioural symptoms such as apathy, hallucinations and psychomotor agitation.

Nevertheless, the effects are transitory, they last mostly for about one to two years and only rarely there can be beneficial effects for as long as four to five years. In each case, though, the disease then follows its course. Only thirty to forty percent of patients feel any benefit from these drugs. Some cannot tolerate the unpleasant side effects (nausea, vomiting, insomnia, motor restlessness, mental confusion) while the rest to not get any benefit at all from the drug. It is evident that the efficacy of this treatment is much greater the earlier it is started.

Anti-inflammatory and anti-oxidant drugs

The theory behind this type of treatment is based on the observation that inflammatory processes play an important part in the neuropathegenisis of the disease and that the suppression of such processes can slow the progress of the disease. Some studies appear to demonstrate a protective effect and a reduction in the speed of the progress of the disease. However, the possible seriousness of the side effects (anaemia, liver damage, gastric ulcers) particularly if they are administered over a long period of time means they should be used cautiously, even if in some cases they can have a beneficial effect.

Immunisation therapy.This is a completely new therapeutic approach using an experimental vaccine, which can slow the progress of the disease by preventing the accumulation of a protein fragment called beta-amyloidwhich is responsible for the symptoms of Alzheimer's. This is still in its experimental stage and not in use, but looks encouraging.

Non medical treatment for cognitive and cognitive behavioural rehabilitation

Phsycological support

Non-medical treatment for Alzheimer's disease is based on cognitive rehabilitation and psychosocial and behavioural interventions. These tend to improve the quality of everyday life, improving self-sufficiency, coping strategies and raising self-esteem. The aim is to help the person to make the best possible use of their own resources. The techniques used most widely are Reality orientation (ROT), Validation therapy, Gentlecare, reminiscence therapy and music therapy.

Behavioural support

There is a lack of established research into these therapies, for which their real use in helping the patient maintain mental skills is not entirely proven. One of their drawbacks is that when they are used their effects are lost rapidly, because of the memory deficit and the difficulty in learning, which is so typical of the disease. For this reason, they have to be continually and periodically repeated, depending on the level of residual ability the patient has as the disease progresses.

Reality orientation therapy (ROT)

This is the most common cognitive therapy. It is aimed at reorientating the patient towards themselves, their history and surrounding environment. It can modify unusual behaviour, raise self-esteem and help them integrate better socially.

Validation therapy

This is an alternative for patients who have moderate to severe cognitive deficit and are not in a fit state to respond to ROT. By talking to the patient, the therapist tries to see the world through their eyes and hopes to get the patient to express their emotions freely.

Gentlecare[2]is a global approach that considers the patient in the context of their life, with the view of making their environment fit to accommodate the new demands of their life.

Reminiscence therapy

Past events are the cue for stimulating the resources of residual memory and retrieving pleasurable memories. This often takes place as a structured group activity and the participants should not be too cognitively impaired.

Music therapySo far there are not any real demonstrations of the efficacy of this, but only studies on individual cases or small groups. It is a way of conveying non-verbal information, the comprehension of which is conserved even in the more advanced stages of the disease.

Thinking about relationships

There are positive indications for an improvement in the social-relational aspects and minimising behavioural disturbances, even in more serious patients.

In conclusion, it will be probably be a long time before there is any really effective drug therapy for Alzheimer's disease, in the sense of finding a cure (stopping the process). In the meantime, the appropriate use of current drug treatment available combined with a cognitive-behavioural approach relating to the different stages of seriousness of the disease, appears to be the most suitable and effective solution.

What should the caregiver do?

Do not let yourself be taken over completely

The care programme should take the caregivers needs into consideration too. They need to say to themselves: " I will try to talk about my fears". It is a good idea to try to talk to experts but also to people who have already faced the same problem. Talking about fears can reduce anxiety. Try and voice any fears about the future. Doing this in good time, when the burden of caregiving is still not too onerous, is beneficial because there is more freedom to find solutions. Doing everything possible to conserve at least some aspects of your own life style, social relationships and interests, will help enormously while caring for the patient and also when they are no longer there.

Some advice

Do not make hasty decisions

Avoid centring all your attention on the patient and on the new situation that is evolving, and always direct it towards the outside world, towards your own life style, towards your own needs. At the same time defend yourself from the "commonly held idea" that sees isolation as an inevitable side effect of caregiving. Do not take hasty decisions.

One of these could be the decision to give up work or to cut down drastically in order to care for the ill person. Such a radical decision needs careful thought. When thinking about this it might be useful to talk to someone from outside the family who understands the problems involved. They can help you weigh up all the pros and cons of such a choice. In these cases it is advisable not to take any immediate decision about handing in notice at work, even if certain circumstances seem to demand it.

The same is valid in particular family set ups too, for example, An unmarried daughter who is still living at home and quite close to retirement age can be pressurised by the other relatives to give up work and become a full time caregiver. Everybody should have the right to choose calmly and make their decisions after having weighed up all the possible solutions.

Chapter III: The intermediate stage. The progressive loss of autonomy.

Silvia is 82 years old and for a long time she has complained about problems with her memory and speech. She lives with her 90- year old husband. She is reasonably well but moves with difficulty and depends on her children to take her to the doctors regularly. They also help her at home.

She and her husband are cared for daily in their home by paid help. In fact she seems well looked after, dressed well and hair combed, but her son reports that it is becoming increasingly difficult to persuade her to have a bath or change her clothes. Previously she was someone who took great care over her appearance as her job involved her coming into contact with the public. She has lost all interest in the house and appears completely disorientated even if she has to cook the simplest of meals.

She does not read or watch the television any more because it is too difficult to concentrate on the complexity of what she is seeing. During the consultation she speaks little and what she says is not always relevant. She talks about her mother as if she was still alive, remembering what she used to say to her and then sometimes remembers, without showing any apparent emotion, that she is dead. When she is asked she does not remember if she has two or three children, even when she says that they look after her very well.

Nora is an attractive woman of 80 years old. She is tall and thin and has been a countrywoman all her life. She never had much interest outside her work, but now she has lapsed into a deep apathy. She eats, sleeps, but spends the best part of the day in bed, gazing at the ceiling. This apathy is interspersed with moments of unjustified rage, directed mainly at her daughter, complaining about not being looked after properly. Her daughter who retired slightly early so she could look after her mother and dedicates most of her time to her as she still lives alone. But as soon as she returns home her mother telephones her to ask why she has not been to see her that day. N. is capable of heating up a bit of food for herself, but she needs an eye kept on her to make sure she eats, because she forgets, and at the right time. Sometimes she has lunch at 10am and supper at 4pm. During the consultation she complains repeatedly about how lonely she is, her physical complaints, how ungrateful her children are, but claims to manage perfectly well on her own. She has no idea what year it is and always wants to dress in the same clothes. It is very difficult to persuade her to wear appropriate clothes for the different seasons.

She expresses herself reasonably clearly, but uses stereotypical phrases about few subjects, which she repeats continually.

What do we need to know?

Behaviour that has not been seen before

In the intermediate stages of the disease temporal disorientation is the rule and spatial disorientation is partial or total. If the person goes out on their own or outside their normal circuit they can get lost and can find themselves aimlessly wandering the streets in a state of confusion, without remembering their name or where they live. This can happen in a place they know well.

Language Disturbance

As the disease progresses language becomes increasingly lacking in content and often wrong words are used. Handwriting deteriorates and the patient can become incapable of writing, even when other manual motor abilities are intact (alexia). They can have real disturbances with language, Aphasia gets worse, passing from an incapacity to find the words to express themselves properly to an "empty" language" that can sometimes be verbose or exaggerated because of interiorised automatism or mechanisms of repetition. Paraphrases appear, they may use the wrong word for something: for example, table instead of chair or window instead of door. They become incapable of constructing a sentence using grammar and syntax (agrammatism) or they tend to repeat a phrase or a word without giving any precise meaning to it, filling the gaps in their memory with ideas and fantastic desires (perserevence and palilalia)

Confusion and mistakes

In some cases they repeat the questions that they have just been asked or the last word the person who is talking to them said (echolalia). They make mistakes in the co-ordination of movements (praxia) used to carry out simple and common gestures, they cannot manage to handle objects, lose independence in dressing themselves, washing, feeding themselves, they confuse one piece of clothing or an object with another (putting on underpants over trousers or putting a shirt on back to front) and so on.

Difficulties in reasoning become more obvious. For example, the patient makes glaring errors of judgement in the analysis of simple questions, they are less capable of planning actions and attention deficit deteriorates.

Attention to protection of rights

Consider the eventuality of disability

At this stage an evaluation should be made about whether some form of legal protection provided for by current national legislation needs to be set in place.

Is the deterioration of the condition such as to influence person's ability to express their wishes and intent?

The caregiver confronted by progressive decline

Do not lose courage Do not be ruthless

What attitude should the caregiver adopt?The caregiver has to live with the gradual loss of autonomy of the patient, but must not take away too much freedom from them, so that they can still do as much as they are able to. The process of loss can be rapid or slow and methods of treatment and caring can contribute towards accelerating or slowing this process. The caregiver needs to adopt an attitude of positive encouragement without getting angry and avoid passivity or resignation. They need to be able to cope with the situation that has been caused by the disease. It is important to be prepared and have at ones disposal sufficient information about how to deal effectively with stress. The support and advice of social services within the caring programme is vital and so the caregiver must adopt an open attitude towards the outside world, towards the facilities and the social services in the area, and avoid becoming isolated.

Who are the best people to talk to?

In this stage of the disease the caregiver has to find a balance between accepting that the demented person is gradually losing autonomy and at the same time trying not to overprotect the person, so that they can still do as much as they are able to. The progress of the disease can vary and methods of treatment and caring can contribute towards accelerating or slowing this process. The caregiver should try to adopt an attitude of positive encouragement and avoid getting angry. They need to be able to cope with the situation and it is important to be prepared and have at one's disposal sufficient information about how to deal effectively with stress. The support and advice of the services within the caring programme is vital and the caregiver needs to adopt an open attitude towards the outside world, toward the facilities and the services present in the area.

If the caregiver has already made some contact with the local services or other help organisations all they need to do is to maintain and intensify these contacts. If contact has not yet been made this should be done immediately as indicated in the previous pages, as social isolation and inaction could have negative effects.

What to do?

Managing behaviour

Behaviour deficit deteriorates

In this stage of the disease a neuropsychological examination can chart the course of the cognitive function.

It is very important for the family members to know which cognitive functions have deteriorated and which have been partially conserved. They can then stimulate the residual ability of the patient as much as possible and try to avoid giving them tasks that are too difficult.

Here are a few suggestions, corresponding to the main deficits that can be manifested.

-Temporal orientation. This is notably reduced or sense of time is lost so that any tasks that need to be carried out or appointments remembered can send the patient into a state of psychomotory agitation that can trigger exaggerated and unjustified emotional reactions. It is a good idea to organise the day using fixed events as points of reference wherever possible (breakfast, walk, lunch, nap etc). Whenever something out of the ordinary happens- like a visit to the doctors- it is wise to tell them about it only at the right moment, without making too much fuss about it. The patient needs constant reassurance, adjusted to their levels of orientation.

- Spatial orientation

The person becomes disorientated in the neighbourhood near their house and surrounding streets so they prefer not to go out. The caregiver may now have to accompany them whenever they do go out. Even though this may become difficult they should still be encouraged to go out so they stay active. This could mean going out into the garden if there is one, or areas near their home that are safe or continuing to frequent familiar places (day centres, clubs etc.) where there will be friends they can trust (or dedicated staff) who can discreetly keep an eye on them. When outside the home it is important to direct the patient's attention towards objects or points of reference that are familiar and when at home towards objects or places within it that stimulate emotion.

Some practical suggestions

-Capacity for abstraction.This is seriously compromised so it is difficult for the patient to understand complex situations. The messages and instructions must be as simple as possible and be conveyed one at a time. The caregiver must be ready to interpret complex situations to reassure the patient that somebody is taking care of them.

Language disturbances.Only simple messages are affected. The capacity of the patient to express discomfort and to understand why is diminished, so they become easily frustrated rather than saying clearly what they want. The caregiver has to be very observant and try to understand what it is that the patient wants even if they have to try and work it out from their expression.

Agitation.The patient lives in a world that he cannot predict or control and this can result in them becoming agitated. Things in the environment that could be disturbing should be avoided. (lights that are either too low or too bright, too much noise, changing the furniture around). The patient is often afraid of the dark and their agitation can get worse in the evening. Taking these precautions does not mean depriving them of things or eliminating stimuli. The caregiver must remain as calm as possible and convey this by adopting a serene attitude. Physical contact, hugging and caresses are very important because they are reassuring, as is trying to put into words what the patient might be feeling but cannot express themselves, or distracting them from objects or situations that they find worrying. This should be done when there are other people in the house or when they have sudden outbursts of rage. Violent or strong reactions from the caregiver do not have a positive effect and it is important to foster an emotional atmosphere with as little tension as possible.

Apathy. The patient tends to do much less and spends a lot of time sitting quietly. They should be prevented from doing this as far as is possible, so the caregiver needs to involve them in some new sort of activity, without using undue force. Even mild forms of neglect should be avoided. Behaviour that does not involve any interaction, such as leaving them in front of the television for long periods, could be considered as a mild form of neglect and should be avoided. Finding a place in a Day centre could be beneficial at this stage.

Frustration.Someone with Alzheimer's is constantly confronted with the loss of their previous ability and frustrating situations increase with the progress of the disease. The loss of cognitive efficiency means they may have to give up interests and things they used to be able to do. The caregiver needs to keep a careful check on their residual ability and exploit this in specific activities.

Hallucinations.

These can often occur (and can be visual or auditory) and can trigger real delirium. Examples are a lady serving tea to people on the television and another claiming that her husband wanted to kill her by pointing a knife at her throat. In many cases, as the hallucinations can be devastating for the person, treatment with drugs may be necessary. In other cases suitable occupational therapy to keep them occupied can help.

Safety at home.

As discussed before the home environment may need modifications to avoid possible accidents that could be caused by their behavioural disturbances (not using gas or water correctly, being distracted when using electrical appliances etc.).

Consider having help from social services

Ask for help from social services

In this stage it is important to think about what help could be obtained from social services.

Attention to protection of rights

At this stage of the disease it is not only the physical and psychological condition that needs to be considered and all the help available for various problems. Legal protection needs to be addressed in order to use the different legal acts provided for on this matter.

What are the consequences?

The risk of collapse (from exhaustion and stress)

Increased exhaustion

At this stage the progress of the disease cannot really be altered. Treatment and care plans already agreed upon and described in the preceding pages should continue.

At this point most of the attention should be focused on the caregiver. The build up of stress and tiredness, not tempered by any moments of relief could bring the situation to a state of collapse.

Asking for help from social services

This is the time when deciding whether or not to admit the demented person to a care home will become an issue, even though this could have negative consequences for all involved because it means the situation is no longer tenable. This decision could cause feelings of guilt or inadequacy, which can cause anxiety and suffering. Turning to the social and health services can be very helpful at this stage. However, the caregiver should be prepared to be very precise and persistent about what help they need. The caregiver or other family members need to actively liase with social services, to make sure that they provide a proper care plan for the patient, which should include support for the caregiver.

Having to choose and possible conflict

Make choices for yourself as well

The length of the illness and the burden of caring can prevent the caregiver from thinking about their own health and looking after themselves properly. They can become worn down by it all and this can affect the level of care they can offer the patient. There could also be conflict within the family, as they may feel that they are losing precious moments of their life.

This problem needs to be addressed carefully, because while it is true that throughout life we face a great deal of change, it is also true that becoming a caregiver can absorb a person so completely that they are unable to fulfil other equally important commitments in their lives.

Some comments from caregivers:

" I ought to be looking after my grand-children and my children, but I can't do it or if I do it's not enough, my mother takes up all my time".

"Even when I'm with my wife, my thoughts are always there..."

a husband who allowed himself a brief holiday with his young wife and so was unable to care for his mother who is also cared for daily by a paid caregiver.

"My grandson is nine years old. I didn't see him when he was very small. He doesn't know me very well now, all he sees is a granny who is always looking after an ill granddad".

There are many family members involved in caregiving who express nostalgia or bitterness for not having been able to enjoy their grandchildren because they are involved full time in the care of a spouse, a parent or an in-law. To prevent this happening other people and social services will have to be involved. Support groups, already discussed earlier, can be very beneficial.

What treatment is possible?

Try a support group

In the support programme there can be specific treatments that should be discussed with the services and the doctor. Support therapy, psychotherapy, support groups, drug treatment, relaxation therapy, etc. These are treatments already described in the preceding pages.

How should the caregiver do?

Consider help from relatives, friends neighbours

Ask for help from relatives, friends and neighbours

The patient will need far more care in this stage but the needs of the caregiver must also be met and the support they require included in the care plan.

In this stage it is important that they have information about the various services involved that can share in the care, which is probably going to increase. Unless this has been done already all resources available within the family, network of friends and institutional will need to be identified.

It is a good idea to have a family conference in order to decide how care is going to be organised. If the family finds it difficult confront the problem together someone from outside the family could be asked to act as mediator (a doctor, priest, social worker or psychologist) to help them reach a satisfactory result. Friends, acquaintances and neighbours can also help in caring for the patient; they can watch over them if they have a tendency to wander off, stay with them for short periods when the caregiver is absent, help in unexpected situations or relieve the family members in some tasks.

Realism and pragmatism can help towards resisting the temptation for heroism

Do not be tempted by heroism

The caregiver should never undervalue the situation and should see the difficulties they face as a challenge. The same attitude could be adopted towards social services, which are seen as being inefficient and inadequate. There is always the possibility that social services and the network of support within the community will not respond adequately to what is required of them. If this happens it is best to be realistic and act accordingly, trying to do the right thing without being under any illusion or getting hopes up unnecessarily. These could collapse at any moment causing irreparable damage.

The physiotherapist's advice

The prolonged state of stress the caregiver is exposed to when they are looking after someone puts their whole body under severe pressure. We know all too well how our body has to continually defend itself from harmful substances present in the environment and our food. Difficult situations affect us physically and mentally. You need to take appropriate action to help your body to re-balance itself and to free it from toxic substances. There are several things that can be done to restore energy levels.

A couple of hours of sunlight a day allow the brain to produce the substances that prevent depression. It is a good idea to keep the shutters or curtains open at home to allow light in. Gardening or take a pleasant walk outside is another way of getting sunshine.

If your knees are not too painful, walking up and down stairs when you go out helps to keep the muscles that protect the back from pain supple. Walking increases the uptake of calcium into the bones. A brisk three-kilometre walk keeps the heart healthy.

Walking improves venous circulation and better circulation has a beneficial action on the whole body, including the internal organs.

It is important to continue going out on the street and coming into contact with people and traffic. This can be stressful but it is also useful as it prevents us from losing the habit of controlling all the stimuli that can be confusing (cars moving, loud noises etc.) and helps keep our sense of equilibrium and orientation.

If you spend too long at home you may feel tired and stiff; but if you try to find time to do exercises that invigorate the body you should feel more comfortable. Some exercises are more beneficial than others. If you never joined an exercise class before be guided by your instincts in choosing the right one.

Exercises you choose because they are beneficial and seem to bring some relief, will be the right ones for you. These exercises can be repeated as often as you like as long as you do not get tired and do not overdo it. Keep your joints mobile, stop if you feel any discomfort, do not do too much.

The range of exercises can be increased a little at a time. If you have not done any exercise for a while you may feel a little stiff to begin with. Do not worry, this is a sign of the muscles not being used to this activity and will go away after a while.

Drink water, your muscles need it. Lack of sleep damages the tissues and makes them painful. Keeping mobile can help to repair this damage. Keep your skin hydrated and massage your joints, particularly ankles and feet, this will give some relief and will help restore some of the strength you need.

Chapter IV: The deterioration in the disease and the relationship with Social Services:
dependence or collaboration?

C. is 73 years old and up to six months ago although she had significant memory problems was relatively self-sufficient. She has been a widow for many years, lives with her son, daughter-in-law and young grandchildren who she has always helped to look after. Now the children are afraid of her because she shouts suddenly for no reason and no longer recognises them. She spends much of the day asleep but up until a month ago she wandered around continuously at night, waking the family up and frightening them by suddenly appearing in their bedrooms. She can feed herself but often stops eating because she cannot recognise the cutlery and has to be spoon- fed. When she drinks, the glass has to be brought to her mouth otherwise she pours the water out on to her plate and tries to get it by poking it with her fork. She is incontinent and needs washing and changing. During the interview if she is asked a question she does not answer.

She smiles occasionally, mumbles to herself and carefully folds and refolds a piece of material, a scrap left over from her old occupation as a seamstress and fine embroiderer.

 

M. is a tiny lady who has lived for years with a fulltime caregiver and is also helped by her daughter. After a period when she became very aggressive, both verbally and physically, she has cut herself off from the real world completely. She now allows herself to be led everywhere without giving any sign that she understands what is happening.

She submits docilely to being examined at the doctors, during which time she confabulates constantly, talking to imaginary people about things that are incomprehensible. She does not understand instructions she is given, however simple, such as "Shut your eyes". She only recognises her daughter occasionally and mixes her up with her mother or her sister.

What do caregivers need to know?

The symptoms of the disease

As the disease gets worse all the person's cognitive functions are seriously compromised. This affects their ability to carry out everyday activities. The motor capacity and primary sensory may be preserved, at least until the progressive character of the disease has led to complete disability. As episodes of behavioural disturbances increase so does the caring burden and the emotional impact on the caregiver and the family.

Symptoms of the disease in an advanced phase

Many people lose control of their bladder first and then their bowels. They often cannot recognise their family or close friends.

They forget their spouse's name or think they are someone else.

They forget most of the recent events in their lives and are completely disorientated in space and time

They cannot count backwards and sometimes they cannot count up to ten either.

They need constant assistance in their everyday life

Sleep is often disturbed and they may need to be prescribed sleeping tablets.

Personality changes and behavioural disturbances become more frequent and can include delirium, jealousy, feelings of persecution, obsessive symptoms, anxiety and agitation with verbal and physical aggression, apathy and hallucinations.

An increasing burden of care

Learn from the professional caregivers

The disabilities that appear in this stage appear at the same time as the person begins to be incapable of carrying out daily activities on their own. This means an increased workload for the caregiver and the need to learn how to carry out basic care properly(intimate hygiene, getting the person up and putting them back to bed, helping them mobilise etc). The professional careworkers involved should teach the caregiver how to do all these tasks, so the patient is guaranteed an effective continuity of care.

Care in the home

Increasingly bed bound

As the disease gets worse living at home becomes increasingly difficult, the patient spends most of their time in their bedroom. Some adjustments will be needed to ensure safety and prevent complications caused by being bed bound. The best solution is to have a bed with an adjustable backrest so they can sit up comfortably. The bed should also have cot-sides as there is now a greater risk of an accident happening, particularly at night. The bed should be the right height for the patient so it is easier for them to get in and out of it.

Who are the best people to talk to?

Ask for help From social services...

In this stage the network of relationships should be well established. If they are not then the steps indicated earlier need to be taken. At this point of the disease there is the risk that the everyday relationship can develop a habitual feeling to it and the caregiver can experience an increasing sense of isolation. It is worth considering the help that social services can realistically offer, which could include recovery in a care home.

...and organisations

If the caregiver decides that they need help (including admission to a care home) they will need to speak with the doctor, the social workers and/or psychologist in order to agree on the best course of action and they should not feel guilty, which could make them feel worse.

What to do?

Think about getting financial help

In the final stage of the disease all the basic functions (bathing, dressing, using the lavatory, moving around, feeding, bladder and bowel control) can be compromised and the person can need permanent assistance 24 hours a day. Help from social services will need to be part of the regular care plan.

Helping the elderly person live in their own home

Eliminate dangers from the bedroom

Despite the deterioration of their condition the patient should be encouraged to spend as much time as possible out of bed. They should sit in a comfortable armchair near a window or in a pleasant spot in the home where the caregiver can keep an eye on them. Its cover should be washable for obvious reasons of hygiene.

In order to facilitate mobilising the patient in their room and around the home there should be places they can hold on to and there should not be any objects lying around that they could trip over. Here are a few pieces of advice:

  • Small tables and other small articles of furniture should not be easily overturned.
  • All surfaces should be kept free of fragile objects that could fall if they were knocked.
  • Furniture with handles or other bits that jut out should be fastened to the walls so they do not fall over.
  • If the patient is in an agitated state it is advisable not to limit access to different rooms, leaving the doors open so as not increase feelings of anxiety.

Attention to protection and rights

Interdiction is is a way of protecting the patient

In this stage of the disease the patient has lost every capacity for wish or intent and cannot take care of themselves or carry out the administration of their assets.

In the earlier stages provisions can be adopted, appointing a trustee or a guardian to manage their affairs. At this point it may be necessary to resort to interdiction in case of need, which is the maximum form of intervention on incapacity.

What are the consequences?

Increased tiredness Causes increased stress

In this stage of the disease the caregiver has to decide whether they should carry on caring for the patient at home or find a suitable care home.

This is a very difficult decision to make and depends on how much care is required and on how stressful and tiring the caregiver is finding everything.

Some caregivers say that they feel as if they are "under house arrest".

They are talking about not having any time to themselves and may have reached a point where caregiving takes up all their time, which can be physically and emotionally exhausting. Sometimes the caregiver does not realise this is happening and it is possible that the people around them may be the ones to see what is happening. Excessive stress can sometimes manifest itself as verbal or physical aggression towards the person. When this happens it will almost always provoke profound feelings of guilt. This is a real and widespread danger that should not be ignored and the warning signs should be recognised in good time.

...but don't decide on your own

Institutionalisation is one possible choice depending on the resources available and on how much care is needed. It is important that the relationship between the caregiver and the demented person is not broken but it will be different when it continues in another setting. One lady, after having admitted her husband to a care home in an advanced state of Alzheimer's said that she felt as if "her heart had turned to stone".

This phrase clearly expresses a deep sense of anguish and a feeling of defeat. She is experiencing the "social shame" of someone who thinks agreeing to admission to a care home is an act that is both unethical and irresponsible. The caregiver's state of mind cannot be ignored. They need to be helped to understand that admission to a care home can be a very responsible act.

When considering admission to a care home the family needs to be listened to, to feel accepted in their difficult situation without being judged, to be supported in the search for solutions that respond to their personal needs, to feel they can talk openly about the ambivalence they feel between wanting to "escape from the problem" and the anxiety this choice inevitably brings, and also to feel that their own reactions are understood even though at times it may appear as if they are "running away from the problem".

What treatment is possible?

Less therapy and more care

By the time the disease has reached this stage there is no particular treatment.

To assist and care

Benefits from some drug treatments (eg. Acetycholinesterase inhibitors) have no effect on cognitive function and in fact can have unpleasant side effects (agitation). Antipsychotic drugs can be effective when given on a regular basis.

Depending on the gravity of the disease Occupational therapy can be useful in this stage

Care and attention for the caregiver

Do not overestimate your own energy levels

In this stage of the disease, when it seems that "nothing can change" the caregiver needs particular attention. The caregiver, particularly if a family member, will often deny they are finding everything too much and need help. They often refuse every offer of help. They are deeply involved emotionally and even the smallest change can disturb their equilibrium. In order to be able to help the caregiver a lot of patience is required and it is important not to give up if they do not seem to want to talk straight away. They will often "keep everything bottled up" and they do not want to let on that they feel a sense of guilt about how tired they are and any aggressive feelings they might have. The perception that "nothing can change" also influences them emotionally and can make it difficult for them to communicate, as if their "bad feelings" should be repressed and eradicated, so nobody can see them. At this point the best therapy is having someone to talk to who will listen to them.

Talk and listen. Do not be isolated

This can happen in a one-to-one relationship with a professional or in a group of other people who share the same problems, like a support group. These groups help by discovering shared experiences and discussing feelings in a comfortable and welcoming environment. They can offer a period of temporary relief and an opportunity to "recharge batteries". It can also provide a welcome break to routine and allows people to see things from a distance, allowing them to recognise the need to "take time out".

What should the caregiver do?

Try not be a hero

In this stage of the disease the caregiver's situation, as will have been understood in the previous pages, seems quite critical, after a long period of commitment there are no prospects of respite, but the disease and the level of commitment continues to get worse.

Keep the window open on the outside world

"I am only flesh and blood". The caregiver often uses this simple but effective saying that expresses their fear of not being able to carry on and their realisation that the patient need more care. This is independent of the care they receive from social services. They can sometimes develop a sort of dependence on social services because they may be the only people that they actually talk to. It is possible that resignation, passivity and mistrust take root more easily when someone is already tired. The greatest risk is isolation.

It can seem that the only problem for the caregiver is the person they care for, so they can be tempted to "cut ties" with other people. It needs courage and determination to keep the window open on the world. It is important to remain committed to the task of caregiving with the help of social services and not to feel victimised because an open relationship with the community and with the network of support it offers is vital.

Chapter V: The last stage, when death becomes an "acceptable" event

When we met S. he was still extremely lucid, and despite his age more than able to decide things for himself, and sometimes for others. We talked to him and reminisced, but over time his memories faded and became confused. He mixed people up, forgot names and he forgot who we were too. He has now been bed bound for some time. For some months he has been cared for by his wife and nursing staff. He is turned regularly so he does not stay in the same position for too long, washed frequently and cared for lovingly. He is fed semi solid food and fluids, and lies in a foetal position, with his limbs contracted on his chest. He is attended to constantly to prevent bed- sores. His muscles are wasted and his bones are visible, even in his hands that repeatedly pat a furry bear. The only thing that seems to be alive are his eyes and although he gazes into space most of the time sometimes he looks at you and you do not know if he recognises you. He still makes a few sounds that only his wife understands.

 

I. has been lying in bed for more than three years cared for constantly by her daughter. She is tiny and her skin is so pale that she seems almost transparent. She has just recovered from pneumonia although her daughter often asks why and for what reason.

She is washed every day, dressed, changed like a baby, but she has still developed bed- sores that are dressed daily by the district nurse. She can no longer recognise anyone and has not spoken for a very long time, she finds it difficult to swallow any sort of food, but when her daughter draws close and calls her "Mum" she smiles.

What do caregivers need to know?

Common symptoms

Total dependence

In the last stage of the disease there is a complete loss of cognitive efficiency and the ability to recognise people and familiar places. At this point they are usually confined to bed, because of motor disturbances, which means they cannot remain in an upright position. The most frequent of these motor disturbances are rigidity in the trunk, in the back of the neck and limbs and tremor. Speech is reduced to incomprehensible sounds. Feeding becomes very difficult because they find it difficult to swallow. This can often lead to complications such as pneumonia, caused by the inhalation of food or drink. Incontinence is common. They need constant care. There are various neurological symptoms, convulsions, uncontrollable muscle spasms, rigidity and tremors. Adequate nutrition becomes increasingly problematic and being confined to bed leads to loss of muscle mass and the destruction of bone mass with increased output of calcium in the urine.

Closeness to death (Liberation and emptiness)

Questions about death...

In this stage it is more important than ever to confront the patient's death, because death is not only inevitable but it becomes "acceptable".

Although death is a natural event like birth, it leaves a void. This void is felt even when the person who dies is old and has suffered greatly. It is important to be prepared.

In our culture the issue of death is largely ignored. In fact, to a certain extent, it seems as if its very existence is denied. Society sends out messages like "don't think about it", "there's always hope" or similar expressions. There is the risk of finding yourself alone even before the death of the person you have been caring for. This could mean a second sort of solitude, apart from that felt at the beginning of the disease when you decide to become a caregiver.

...and where to die

A decision regarding the place to die still needs to be made unless the decision has not already been taken by admission to a care home. Whether it is better for the patient to die at home or somewhere else is a decision that may have to be decided with other relatives.

Protection of rights

Warning of possible maltreatment

Protection of rights from a legal point of view, particularly if nothing has been done about it the earlier stages, should now be addressed urgently. The patient now needs everything doing for them. The caregiver has the moral obligation to convince the family, or in their absence, the courts to intervene in order to offer them legal protection. If the patient is in a care home, great care should be taken. Care homes can be depressing and dismal places where the elderly are kept in abysmal and inhuman conditions, and are taken advantage of as they are often not aware of what is going on around them. But they are still human beings and have a right to be treated with dignity.

The patient should not be abandoned just because their dementia has led them to become a burden and limits the freedom of whoever is living with them or caring for them.

Who are the best people to talk to?

To be ready and made ready for death

It is difficult to find people to talk to about death. Everyone tends to shy away from discussing it. It is not easy to discuss it calmly but it is very important. It is often the caregiver who has to take the initiative.

Discussing it with other family members and social services can help them face up to the emptiness that will be left behind and focus on the period that will follow the death.

Religion in these cases can be very comforting, so if the person who is dying or the caregiver is religious talking to a minister can be helpful.

The sheer length of time that Alzheimer's disease lasts can prevent you thinking about death, and it may seem as if thinking about it implies a "guilty" desire that the suffering might stop.

It is beneficial for the family to voice their thoughts on the death of the patient, but their views should be respected and they should be allowed to express themselves in their own time and when they feel able to. The disease "takes away" their relative before they actually die and many people grieve throughout the illness.

In this stage it is still important to be in contact with relatives' organisations and particularly support groups.

...and for after the death

There is much evidence on this matter. In one support group someone asked the difficult question if the others had ever wished that their loved one would die and if they thought that death was better than living. In groups like this such thoughts can be openly expressed and listened to.

Support groups can also be very supportive in the period following the death of the person, during the period of mourning and when the caregiver has to deal with feelings of guilt and reorganise their own life.

What to do?

Symptomatic treatment, non-aggressive treatment

Avoiding aggressive treatment

Faced by a dramatic and rapidly deteriorating situation, many ailments are now manifested amongst which are weight loss, difficulty in swallowing and chewing, refusing food, widespread muscle rigidity, complete loss of autonomy and immobility.

The caregiver should discuss this with the professionals who should be able to help them come to a decision about the best course of action. Specialist services may be necessary particularly for health reasons.

In these cases the only treatments possible are symptomatic, such as good nutrition and passive physiotherapy to avoid abnormal posture and anti-spasmodic drugs. Palliative care, analgesics and similar interventions can become important choices for the person in the last stage.

To prevent pain

The social services and the caregiver will have to face the prospect of death and all its consequences. It is possible that social services will not deal with the problem satisfactorily. The caregiver will have to take the initiative here, either to communicate their fears and anxieties or to ask for advice. There is a right to have a "good death" and this is one of the rights of protection that needs to be respected by relatives and family members beginning with the choice of the place to die.

The caregiver should realise that in the end stage relatives and family members may either show greater willingness to be involved or they could draw back and avoid meetings so as not to be involved in taking decisions.

In the case of admission to a residential home

Asking for recovery in a residential home

At this stage recovery in a residential home becomes a solution to consider without experiencing feelings of guilt about it.

Even though admission to an institute may be a last resort after trying to keep the person in their own home for as long as possible, it can become the only option particularly when there are serious health problems and the burden of care has become too much for the family. It can guarantee a better level of safety and care necessary for the well being of the person and help conserve their remaining functions.

Some homes have special "Alzheimer's Units" for these types of patients.

There can be lengthy waiting lists however. Priority is given to those who are more dependent or who have no family to care for them.

It is important that permanent admission is properly planned by the family, not just because there may be a long waiting list but also in order to prepare for the separation.

What are the consequences?

Do not deny death but accept it and discuss it

For the person with dementia the right to "die well" must inevitably be exercised by the caregiver. They also have to decide where the best place for them to die is and whether or not aggressive treatment should be used.

Both social services and the doctor can give the family advice and support in this difficult stage of the disease. The problem of death, affects the caregiver too.

If you "push" death away or always avoid talking about it, when it actually happens, as it inevitably will, it can come as an enormous shock.

This makes relations with other people difficult and the feeling of loss and solitude can be magnified.

An accurate assessment of the stress and fatigue that can be caused by death when it takes place at home is necessary in order to be able to have the support and the necessary help in place.

The alternative of dying somewhere else (hospice, hospital or care home), if any of these options are feasible, brings different consequences, which will need careful evaluation, preferably by discussing the matter with social services.

What is the possible treatment?

Treatment in the final stages

Contrast and prevent pain

Palliative treatment, analgesics and similar interventions can become important choices for the patient.

The caregiver will have to discuss with doctors and social services what the best course of action might be.

What should the caregiver do?

Prevent the effects of "emptiness"

The death of the person inevitably highlights the limits of caregiving, which cannot alter the course of the disease or the stages in the cycle of life. For the caregiver, there can be some difficulty in accepting this. So, thinking about death, accepting it and talking about it with other people and with social services can be very helpful.

From a more general point of view it has been observed that family members who have been able to keep some space for themselves, who have accepted that they will get tired and irritated and feel impatient are also those who when death comes for their loved one cry for their loss, experience grief and a deep sense of loss but at the same time find the capacity to resume their life. They also manage to reconcile the difficulties and the satisfactions that have been involved over the years as they cared for their relative.

Guidelines for preventing violence in caregiving of elderly
women with Alzheimer's disease and other forms of dementia

Background

The project "Care for Carers" is funded by the European Commission as part of the Daphne Programme II 2004-2008, to prevent and combat violence against children, young people and women and to protect victims and groups at risk. It brought together professionals, people involved in the care of the elderly, welfare officials, policy makers, representatives of women's and non governamental organisations from Italy, Sweden and Lithuania. Some of these were involved in the work group which is responsible for the running of the project.

During seminars and study-visit exchanges the partcipants discussed the phenomenon of hidden violence and abuse against elderly women with Alzeheimer's disease within the context of caregiving provided for by the services and discussed ways of preventing this and improving the quality of caregiving in EU Member States, without losing sight of the specific cultural and social features of the national welfare state systems.

The work group recognizes differences between Sweden, Italy and Lithuania concerning the policies and actions being taken in this field; differences which were mainly related to the structure and organisation of the welfare system and to the provision of resources made available for professional care services. However, in spite of these differences a large number of common elements were found.

In the first place, in all three countries there was a common awareness about the need for families, professionals and society as a whole to be prepared to confront the increase in the incidence of Alzheimer's disease and other forms of dementia both now and in the future, by supporting caregiving and strengthening its role in the care plans, by cooperation between agencies and participated models of intervention and in the community.

Secondly, all the partners agreed that potential violent behaviours perpetrated by female caregivers against elderly women with Alzheimer's disease and other forms of dementia are rooted in cultural patterns and cannot be tackled with a set of practical measures. Conversely, the problem should be approached within a more comprehsive strategy which encompasses research and dissemination of results, sensibilisation campaigns and promotion of cultural changes about dementia and care work, policies and action supportive of caregivers, innovative and gender sensitive laboral policies, education and training and the provision of community-based facilities.

On the basis of these considerations a number of suggestions and recommendations are now being presented to the European Commission in an attempt to contribute to European policies for the development of good practices in the caring services for elderly people with Alzheimer's disease and dementia in the Member States.

Guidelines

The aim of this document is to contribute to the development of good practices in the caring services for elderly people with Alzheimer's disease and dementia in the E.U., focussing on three main and interrelated areas of concern:

  • consider the increasingly crucial role that caregiving of the frail elderly (in all its forms, formal and informal care, paid and unpaid, public and private) has in caring services and the need to strengthen support from the authorities and the community as a whole;
  • a deep concern for the gender dimension that characterises the field of caregiving of the elderly with Alzheimer's disease and dementia and for the consequences caused by inequalities between women and men, with particular emphasis on the conditions of migrant women;
  • a deep concern for the increased likelihood of hidden violence and abuse in the relationship between frail elderly people and their caregivers and a strong reccomendation to expose and respond to this problem effectively.

1. Caregivers of elderly people with Alzheimer's disease and dementia. The gender perspective

The expert group notes that in the three countries, caregiving of elderly people with dementia is primarily carried out by women, both in the home - where this responsibility is assumed disproportionately by women, spouses, sisters, daughters, daughters-in-law etc. - and in the formal health and care services - where nurses, nursing assistants, occupational therapists, social workers and home help workers are usually women. This trend is apparent in northern countries like Sweden, where the elderly care system is largely run by the public sector, as well as in south European countries like Italy, where the greatest majority of home help workers and caregivers of the elderly with Alzheimer's disease and dementia, beside the female family member, are migrant women employed privately by the care recipient's relatives. While in Lithuania most of the caregiving falls on the shoulder of the women belonging to the family.

Finally, there is moderate evidence showing that women are over-represented in the statistics on patients with Alzheimer's disease and dementia.

It is observed that the task of caregiving impacts heavily on the caregiver's personal life. Although caregiving can be a physical, financial and family strain it appears that most prevalent problems experienced by caregivers involve negative emotional and cognitive experiences, such as feelings of confinement and restriction of one's social life, role conflict resulting from the competing demands of the care recipient and other family obligations and employment responsibilities. In addition to competing roles, many caregivers must adjust to a new role, in so far as becoming a caregiver results in a change in the former relationship between the caregiver and the care recipient. The emotional and physical demands of caregiving can also cause feelings of depression and grief when the older person does not seem the same person anymore, or irritation if the older person's impairment results in disruptive behaviour and inappropriate social functioning.

There appears to be differences in the way male and female caregivers approach caregiving and in their ability to cope. A Swedish study on caregivers for the demented elderly (Stockholm Gerontology Research Centre and Department of Clinical Neuroscience and Family Medicine, Karolinska Institute, Sweden) reports significant differences between female and male caregivers with female caregivers suffering the most strain. This was exhibited by health problems, conflicts in the family, strained relations with family and others, a less positive outlook and limits in social support because of the caregiving situation. When investigating the group of male caregivers it was found that males caring for a demented elderly person experienced a lack of positive outlook and were more assertive than women, expressing explicitly a need for receiving more social support.

There also appear to be differences in how male and female elderly people see their rights to be treated with consideration. A study conducted in Sweden (SoS rapport 1994) shows that both older women and men reported being victims of abuse, but whereas a consistent number of men reported threats and humiliation from a family caregiver, most women reported episodes in which their caregivers were not involved. This data suggests that men seem to have higher expectations for the quality of care they are entitled to. On the other hand, low levels of women reporting violence could be due to a normalisation process in which they do not recognise and acknowledge mistreatment they endure in the relationship with the caregiver (Jönsson, 2004).

In conclusion, the expert groups acknowledged that regardless of being within the formal or informal, paid or unpaid, public or private, caregiving has a strong gender dimension, which is probably rooted and legitimized within the traditional family roles which look upon the woman as the provider of protection and care for its dependent family members. Drawing on the cited studies it would seem that women tend to internalize this role and in doing so they both disregard their rights to be taken care of themselves and close their eyes to violence when they suffer it at the hands of their caregivers.

2. Caregivers of elderly persons with Alzheimer's disease and dementia. The recognition of violence and abuse

Definition of the concept

The concept of violence as seen by the expert group is a synthesis of two perspectives, the first one drawing upon the UN declaration of violence against women of 1993, which includes "all forms of physical, sexual and psychological threat, damage or harassment", the other perspective relating to elder abuse and to causes that typically appear in caregiving practices. According to this synthesis, the concept of violence and abuse against elderly (women) with Alzheimer's disease and dementia encompasses physical, sexual, psychosocial and financial threat, damage or harassment, as well as neglect, isolation and abandonment.

As regards the target group, although perpetration of violence and abuse by the caregiver is the greatest concern, the group acknowledges that aggressive behaviour may also be perpetrated by the elderly person towards the caregiver. This violence causes stress and generates negative emotions in the caregivers, which they later unload back on to the patient. These two "types" of violence are closely inter-related and that is why it is very important to train caregivers in how to avoid stress and burnout.

Mutual violence refers to cases where the caregiver directs abusive behaviour against the care-recipient and the care-recipient abuses the caregiver. Finally, the group takes into account the forms of violence and abuse which can be perpetrated against informal caregivers who have low status and few rights, like migrant women, particularly undocumented migrant women.

The problem of hidden violence

The work group takes notice that, whereas research data, professional's accounts and caregivers' stories highlight a large number of risk factors which would make the help relationship with the frail elderly highly susceptible to violence and abuse (§, 1.2) there is seldom any explicit reference to violence in literature and virtually no statistics on incidence and typology of violent behaviours. The working group explored some of the possible reasons why violence in the care of elderly with Alzheimer's disease and other forms of dementia, especially women, is mostly hidden and its patterns intrinsically difficult to identify and believe that these explanations apply to both in-home care settings and formal care giving services.

Different hypotheses were formulated in order to find reasons for this:

  • caregiving of the frail elderly is such a difficult and dedicated task that it is almost unthinkable (taboo) to insinuate that violence might occur;
  • episodes of violence and abuse may occur within the walls of the home, thus remaining unnoticed;
  • it is difficult to obtain information from a person who is functionally or cognitively impaired;
  • the carer-recipient, when it is a woman, often does not recognise the signs of violence in the ways she is treated, due to a tendency to consider forms of abuse that she may have suffered earlier in life normal;
  • the woman is not aware that she has a right receive a good level of care and may misintepret behaviour;
  • the caregiver, usually a woman, is so committed in her responsibility that she does not see herself as a potential abuser;
  • there is a prejudice that a certain form of violence in treating the frail elderly is considered normal and even necessary;
  • there is a prejudice that the only real violence against elderly is physical and other more subtle forms of violence are overlooked, such as lack or respect, talking baby language and treating people like objects;
  • It is difficult to distinguish violence when restraints are used for the protection of the elderly person.

Violence and abuse and the use of restraints

The group looked closely at the latter issue. The caregiving relationship with an elderly person with Alzheimer's disease and dementia is an asymmetric relationship with an individual who, due to their functional and cognitive impairment, is not able to make decisions. In addition to aggressive behaviour, violence and abuse may include forms of physical restraints and reduction of freedom through material means, psychological violence which impinge action aimed at influencing the elderly person though reasoning and manipulation of information, privation, action resulting in accelerating the loss of skills and independence, violation of rights, fraud of private papers and valuables, extortion of information by exploiting a condition of weakness and dependence. The extent to which an individual with diagnosed dementia can make decisions varies greatly depending on the course of the disease and the specific family situation and context. The use of the same type of restraint may have a protective function, preventing the elderly person from being harmed or being a way to break through the person's personal dignity.

The employment of women with immigrant background as caregivers. More likelihood of violence?

The working group aknowledges that the phenomenon of migrant women being employed within caregivings services for frail elderly people is different in the partner countries. In Sweden a significant number of women with migrant backgrounds are presently employed as in-home help workers and nursing assistants within the public health and social care system. In Italy migrant women are often employed as domestic help and as caregivers and have been privately employed by the elderly person's family. In some cases the relatives maintain a role in caring for the elderly person, in other cases caregiving is taken on completely by somebody from outside the family. The working group aknowledges that the particularly difficult conditions of being a woman and a caregiver with an migrant background (language difficulties, lower salaries, unstable background, and possible undocumented status) may result in higher stress and therefore increase the risk of violence against the care-recipients