Managing the family

Although patients may not appreciate or be able to follow a detailed discussion of the diagnosis and prognosis, their relatives, spouses, and other carers will. This is an important part of the treatment process; as the carer provides the main interventions for much of the period of the disease process, care should be taken to ensure that appropriate and sufficiently complete information is given.

Caring for a patient with AD can be difficult and stressful and some carers suffer accordingly. (74* The characteristics of both carers and patients influence the impact that this 'burden' of caring has on the carers themselves. Men in general, and husbands in particular, seem to be less vulnerable to the adverse effects of caring, possibly because of the response seen in many male carers of rapidly and effectively recruiting outside help. (75) Women may be socialized into accepting more caring roles themselves and therefore seek less help. Non-white carers appear to suffer from less adverse consequences of caring, perhaps because of cultural differences in the perception of family bonds.(76* Patient characteristics that increase the burden of caring include behavioural disturbances, (77,78) depression/7.9) and unawareness of cognitive impairment/80* but not the cognitive impairment itself. Although the core outcome variable in clinical trials of AD drugs is the severity of cognitive impairment, it is not the variable that induces most stress in relatives nor is it the variable that predicts entry to residential care. Other variables are almost certainly protective, and caring for a loved one with dementia is not a universally negative experience. Much caring is done willingly, effectively, with love, and without complaint.

Carer support groups offer much to a person with a relative afflicted by AD. Through support groups, and especially through the national AD societies and the umbrella group—Alzheimer's Disease International—carers can obtain up-to-date and useful information regarding all aspects of AD. A support group can help individuals practically and emotionally through difficult times. Many carers talk of the support group as a life-line, although little empirical evidence exists as to the impact on carer well being.

One particular intervention for the family is that of genetic counselling. Many relatives are worried about inheriting AD. This concern might arise from two sources—the frequent discussion of genes 'for' AD in the media and the observation of familial occurrence of AD in many individual families. For families with clinically apparent familial AD, advice, information, and where appropriate, genetic testing can be arranged through a genetics centre. Where predictive testing is contemplated for genes causing autosomal dominant, early-onset AD this will adhere to guidelines established for Huntington's disease. It is unlikely that true predictive testing will become available for late-onset AD/81*

Unraveling Alzheimers Disease

Unraveling Alzheimers Disease

I leave absolutely nothing out! Everything that I learned about Alzheimer’s I share with you. This is the most comprehensive report on Alzheimer’s you will ever read. No stone is left unturned in this comprehensive report.

Get My Free Ebook


Post a comment