Alzheimer’s – Improving the lives of patients and carers
Newsletter 2009-2
Publication date : 2009-10-14
The
European Union is home to an estimated 6.1 million people with Alzheimer’s
disease or some other form of dementia. This figure is set to double by 2040
and, according to current trends, a large majority of these people will be
cared for within their own homes. Indeed, already today 82% of dementia
patients in Germany
live at home. This figure stands at 80% for Italy
and around 60% in the UK and
France. But
coping with the behavioural disorders relating to Alzheimer’s and other
diseases can be hugely challenging, especially once the patient starts losing cognitive
functioning abilities and is progressively no longer able to fulfil the
activities of daily living. Behavioural and psychological symptoms such as
apathy, withdrawal, depression, aggression, shouts and sleeping disorders often
lead formal and informal carers to think they have no choice but to resort to
drug treatments. Yet
recent studies have revealed that these kinds of symptoms are not an inevitable
feature of dementia but rather a misunderstood attempt by the patient to meet his
or her physical or psychological needs. With the correct training for carers
and in a well-planned environment, these behaviours can be prevented, rather
than merely controlled. On
5-6 May 2009, France, which is home to 850,000 Alzheimer’s patients and has recently
drawn up an Alzheimer Plan 2008-12, invited representatives from eight other European
countries to discuss, share best practice and make recommendations on how best to
cope with behavioural disorders relating to Alzheimer’s and other related
diseases in the patient’s home. The
first point made by the Peer reviewers was that a timely diagnosis is one of
the most important factors in making sure adequate care arrangements are made
for patients with dementia. However, given the stigma associated with dementia,
the illness is often at an advanced stage before people come for assessment. A
first key policy measure will therefore involve reducing this negative stigma,
namely by improving public education and information, through the media, public
education campaigns, professionals and science, brochures, newsletters, etc. The
second step in guaranteeing quality care is to ensure a proper assessment of the
patient’s illness. Here, reviewers stressed the need for a multi-dimensional
and multi-disciplinary approach that takes into account the patient’s
viewpoint, as well as his or her family and social and physical environment. In
particular, an analysis of the context and situations in which the patient’s
behavioural symptoms occur is crucial to later establishing the right
environment to prevent them. For
example, aggressive behaviour can be a logical response to the person’s
frustration at forgetting how to put on his or her clothes or to not
understanding why an apparent stranger is being so intimate. And much of this behaviour
can be prevented by proactively engaging the person in their environment, either
by engaging them in activities or by engaging them interpersonal interactions. However,
carers need more specialised training to achieve this. They need to be trained to
understand dementia patients. This is true both for medical and nursing
professionals and for any other persons providing direct handson care. In
particular, the families of Alzheimer’s patients may benefit from being shown
coping strategies to deal with their reactions to their relative’s behaviour. What’s
more, reviewers underscored the need to do more to encourage people to train in
the dementia field and to confront the lack of interest that is sometimes
reflected in the humiliating way some professionals interact with people with
dementia. Such trainings
should be made available alongside practical support structures for carers.
Indeed, caring for dementia patients at home puts considerable stress on family
members and the provision of practical support can offer much-needed respite to
carers. Types of practical support include having someone come in to the home
to help with housework or to help assist one’s relative with activities of
daily living (eg washing, dressing), Alzheimer’s’ cafes, where carers can go for
peer support, a help line open 24/7, counselling and advice services. Among
the positive examples, reviewers pointed to the daycare centres for dementia patients
that have been set up in some countries. These provide therapeutic activities which
promote well-being and normal activities consistent with the person’s lifestyle
and preferences, such as gardening, working on farms or engaging with the arts,
such as music, painting or sculpture. Another
suggestion was that each patient should be assigned a care manager, in charge
of regularly assessing his or her condition and of making arrangements for additional
care, home help, etc. http://www.peer-review-social-inclusion.eu/peer-reviews/2009/alzheimers-and-related-diseasesLessons learned
