Support for people with Alzheimer’s and their family members
Receiving a diagnosis of a dementia disorder such as Alzheimer’s can be quite devastating news, for the people directly concerned as well as for their relatives or friends. The perspective of a more challenging and demanding everyday life puts a strain on all those involved.
When a person receives the shattering diagnosis of a dementia disorder such as Alzheimer’s, one of the first things undertaken is to find a therapy that will alleviate the symptoms and slow down the evolution of this incurable illness. In a second phase, all those involved, i.e. the patient with Alzheimer’s as well as family members and friends, need to re-organize the day-to-day life, in a short-term as well as in a long-term perspective.
Various processes become very important: planning, informing oneself, finding help and support, addressing important issues in a way that will benefit to the patient. At the same time, this can be a difficult step, considering that most people involved often experience such a diagnosis as a shock. “It was as if someone had pulled the carpet from underneath our feet”, say many people finding themselves in such a situation. And this, even though the illness does not appear overnight, and the diagnosis comes as a confirmation of a long dreaded suspicion.
Living in familiar surroundings
Taking decisions rapidly in such a state of paralysis may prove to be quite a challenge. Most especially, making decisions that will benefit the patient’s wellbeing is essential, considering that most patients carry on living for some years, not in an institution, but rather in their own homes, with the help of nursing personnel. While this help can be punctual in the beginning, it often needs to take place more and more often, as time goes by and the illness becomes more severe.
In the beginning phase, helping the patient to plan a daily routine can be sufficient – re-organise the home, think of memory-aids (for ex. post-its) that will help and motivate the patient to undertake something or to pursue his hobby.
Major challenge for family members
Most of the time, it is the spouses or life partners, or other family members, or even friends or neighbours, who provide help for people with Alzheimer’s. For all those involved, helping and caring presents a major challenge, which usually increases as time goes by.
As a result of the gradual loss of memory, people with Alzheimer’s may be confronted with ever greater challenges in their day-to-day life. Anger, disappointment and frustration about one’s own destiny, feelings of guilt towards those standing close, sadness or depression, all these may be accompanying manifestations. In order to cope with such feelings, it is important to approach the person with empathy and understanding.
Support for family caregivers
As time goes on and the intensity and duration of cares increases, the capacity of family caregivers may diminish. After some years of being present and caring for a loved person, strength and energy may not be as available as they used to. However, out of a sense of obligation, they often carry on and become sick themselves.
In order to be able to be present for the person with dementia, it is important to take care of one’s self as well, and make use of available support measures. Professional organisations offer help and advice in regard to questions concerning adapting the living environment, organizing day-to-day activities or taking care of personal hygiene.
Such organisations can also provide help in regard to specific questions such as nutrition, sleep disorders, incontinence, pain recognition, aggression or sexuality, but also address questions when the possibility of an eventual transfer in a care institution arises.
Legal and financial aspects
Dealing with legal and financial aspects is also a very important issue. Indeed, as a consequence of dementia, it usually becomes increasingly difficult to address personal affairs. With the ability to judge becoming less and less reliable, there comes a time when it is no longer possible to sign contracts or agreements. Also, providing a valid consent or rejection of medical measures is no longer an option.
For this reason, people with dementia are advised to address questions relating to personal, legal and financial issues at an early stage. This also concerns asking a person to eventually act as legal guardian, to issue a patient decree and to make sure a will has been written.
Text: Patrick Gunti – 01/2012
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