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Asian Tribune is published by World Institute For Asian Studies|Powered by WIAS Vol. 12 No. 2702

Alzheimer’s disease and the family

By Oscar E V Fernando.

Has advancement of science and technology enhanced ‘living’ or mere existence; today’s generation faces the burden of parental old age at a time when they themselves have to provide for their old age: the problem is inevitable unless both parties prepare and plan out well in advance: all the planning will be of little avail in circumstances such as:

Alzheimer’s disease (AD) coming within the definition of dementia: the website on Alzheimer's disease says-dementia affects memory, thinking, behavior and emotions; the symptoms are-loss of memory, difficulty in finding the right words or understanding what people are saying, difficulty in performing previously routine tasks, personality and mood changes.

Although those affected will experience dementia in their own way, eventually they are unable to care for themselves and need help with all aspects of daily life: medical science has not yet discovered a full cure but treatment, advice, and support are available.

These symptoms can best be exemplified with an excerpt from ‘The 36-Hour Day’, a book that should be read by families and caregivers of patients with AD.

‘Often, Mary was afraid—a nameless, shapeless fear; her impaired mind could not put a name or an explanation to her fear; people came, memories came, and then they slipped away; she could not tell what was real and what was not; the bathroom was not where it was yesterday; dressing became an insurmountable ordeal—Mary gradually lost the ability to make sense out of what her eyes and ears told her; she worried about her things, a chair and the china that had belonged to her mother.

Care givers said they had told her over and over, but she could not remember where her things had gone; perhaps someone had stolen them-she had lost so much.

Mary was glad when her family came to visit; sometimes she remembered their names, more often she did not; she never remembered that they had come last week, so she regularly scolded them for abandoning her; she was glad when they didn't try to remind her of what she had just said or that they had come last week, or ask her if she remembered this person or that one-she liked it best when they just held her and loved her.’

If one suffer from the these symptoms then a doctor’s advice must be sought and if diagnosed of dementia, it may come as a shock even if one suspected it; a host of problems will have to be met such as problems with family and society.

It may help persons with on set of dementia to know that they are not alone and that they have family, friends, medical, health, social workers, counselors, Alzheimer associations and other voluntary groups: on diagnosis they may be worried, sad, lonely, frustrated etc but one may feel relieved that there is a medical reason behind the changes.

It is medically reported that these feelings are normal but there are many things one can do that will help make life easier and more enjoyable, both now and in the future: it is important to realize that any changes are not going to happen suddenly; it will need time to adjust to this lifestyle and to find help when one needs it.

Here are some tips that other people with dementia have found useful:

Be positive, concentrate on the easier tasks, strive to maintain humor and self confidence; be honest as to how you feel about your diagnosis and accept your memory problem, don't be afraid of asking for help and taking it; don't feel you have to rush things; do difficult tasks during times you feel best; arrange for others to help you with tasks that are too difficult; avoid over-stimulation as too much noise and activity can create anxiety and confusion.

If you get frustrated when things are not going well, blame the illness, not yourself; keep a diary and get into the habit of checking it regularly; make notes of where things are; decide where to keep important things like money, keys and glasses and keep a note of where they are so that you can find them; put labels on cupboards; place helpful telephone numbers by the phone; if you are on medication ask your caregivers about help with remembering to take it; get used to newspaper reading to be in touch with events; take care of yourself, eat well, exercise regularly take the prescribed medicines.

Take care of your mental health; make sure that you have someone to talk to about your feelings; keep up your social life, see your friends and keep going out; keep up the skills that you still have and work with your family or doctor to modify activities to your changing abilities; continue with your hobbies; share educational information on dementia with your relatives and friends and invite them to attend educational programs/support groups.

Younger people with dementia have different needs: they may be working, have dependent children, have financial commitments, be physically fit and behave in ways that other people find challenging.

They may be more aware of their disease in the early stages, find it hard to accept and cope with losing skills at such a young age, find it difficult to access information, support and services for younger people with dementia.

Planning ahead can make it easier to manage affairs. It can also mean that one may be able to participate in planning for one’s future and make sure that the wishes are carried out.

While there appears to be no cure for Alzheimer's disease or for most other causes of dementia at present, many of the problems associated with dementia such as restlessness and depression can be treated. It may also be possible especially in the early stages of dementia to improve one's memory with medication says researchers.

It has been researched that AD is probably, the only illness that can truly be described as being the opposite of birth: brain begins shrinking as the disease progresses, and the layers of learning are stripped away in much the same order in which they were laid on from birth: at death the AD patient’s brain resembles that of a newborn infant, and this necessarily implies that family members and care givers have to be mindful that up to the point of reaching this stage, the patient responds to love, touch emotion and the care givers’ sympathetic understanding similar to the responses of a new born infant!

It is said that caring for an AD patient at home can be very demanding both physically and emotionally; it can make the caregiver feel lonely; each day brings new challenges as the caregiver copes with changing levels of ability to new patterns of behavior by the patient; much compassion, will power, adjustments and adaptations may be necessary in the long run: it implies caring for the patient’s general health, keeping an eye on his/her daily activities, avoiding risk of injuries, preventing infections, drug and recreation management and doing all this with much love and care. As the disease gets worse and caring at home becomes increasingly difficult, family members will face difficult decisions about long-term care.

Research has found that the worst that can happen to an AD patient is to be put away from the home environment. With no love and attention the disease could be worsened.

On pragmatic terms, in a poor country such as Sri Lanka, family caregivers will be hard to find as they will become extremely difficult to cope with the attention needed by the patient, and at the same time to be gainfully employed and tend to their own families. These are matters that civil society together with government will have to deal with, in addition to providing homes for the aged and other elderly care.

Would it surprise readers to know that a caregiver must first cultivate loving oneself before being capable of loving and caring for another person, according to a book on instructions to care givers? Does it connote self-esteem, a term often used in business management? Does it also not echo the commandment to love thy neighbor as thyself, terms perhaps not found in the vocabulary of some members of our striking medical fraternity, including our care giving nightingales!

Here is a place of contact for all those concerned with Alzheimer’s disease:

Lanka Alzheimer's Foundation 19 Havelock Road, Colombo 5. Tel: 2583488; Email: alzheimers_foundation@serendib.ws

For more information about AD, the American Kansas Department on Aging has published ‘A Guide for Alzheimer’s disease and Related Disorders’

- Asian Tribune –

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