Care-givers and caring
The immediate family members of patients are often elderly themselves and have their own medical problems. The care-givers should never neglect their own health as their well-being is vital for appropriate care of the patient.
It has been said about Alzheimer’s disease that although the patient has the disease, the family members suffer the most.
In the cultural context of the Member Countries of South-East Asia, care of Alzheimer’s disease patients is best provided by lay care-givers. These lay care-givers should be specifically trained in patient care. They must understand what Alzheimer’s disease is, and what the patient is capable or incapable of doing. Ideally, continuity of care by the same care-giver is desirable, but this may not be practical. The "fatigue factor" of care-givers also needs to be taken into consideration. Immediate family members should be available to extend psychological support and supervision of lay care-givers. It is not necessary for them to do the physical work themselves.
It has been reported that almost half the patients in a study undertaken in Mumbai, India, were either single or widowed. This finding is significant as research workers came across patients who, having nobody to take care of them, were being looked after by neighbours. Clearly, there is a pressing need for state and community organizations to create the infrastructure necessary for the care of such persons. Ironically, none of the residential institutions for the elderly were willing to take in persons diagnosed with Alzheimer’s disease. Since the patients are looked after by their families until the time of death, there is a tremendous need for the education of care-givers and other forms of support. Without this, there is a high risk of patient neglect.
Management of patients of Alzheimer’s disease
While there is no specific cure for Alzheimer’s disease, there is a need to look after the patients as well as their care-givers. Non-pharmacological interventions and the use of residential and domestic resources, such as day care, respite care and nursing home care, may reduce symptoms and suffering. Another important factor is financial and legal counselling essentially needed to preserve income and take decisions affecting the whole family.
In the early stages of Alzheimer’s disease, when intellectual function is reasonably preserved, patients may be encouraged to attend to legal matters and give consent to the types of treatment that they desire. These would form the Advance Directives of the person. An Enduring or Durable Power of Attorney could be prepared in favour of a loved one in the family or some close friend if such procedures are established in the country’s legal system. A formal will could also be executed before it is too late as a result of the patient’s mental incompetence.
In the later stages of Alzheimer’s disease, the patient may not be aware of the consequences of the illness and it would then be a family decision to get him/her assessed and investigated.
Treatment would mostly be based on the symptoms observed and arrangements have to be made for the long-term care of the individual by way of providing for care-givers, especially if there are none in the family.
1. Although I cannot control the disease process, I need to remember I can control many aspects of how it affects my relative.
2. I need to take care of myself, so that I can continue doing the things that are most important.
3. I need to simplify my lifestyle so that my time and energy are available for things that are really important at this time.
4. I need to cultivate the gift of allowing others to help me because caring for my relative is too big a job to be done by one person.
5. I need to take one day at a time rather than worry about what may or may not happen in the future.
6. I need to structure my day because a consistent schedule makes life easier for me and my relative.
7. I need to have a sense of humour because laughter helps to put things in a more positive perspective.
8. I need to remember that my relative is not being difficult on purpose; rather that his behaviour and emotions are distorted by the illness.
9. I need to focus on and enjoy what my relative can still do rather than constantly lament over what is gone.
10. I need to increasingly depend upon other relationships for love and support.
11. I need to frequently remind myself that I am doing the best that I can at this very moment.
12. I need to draw upon the Higher Power, which I believe is available to me.
