Coming out of the shadows of dementia

The fear and dread of losing our memory can make the experience of the disease worse than it needs to be

Most of us will live beyond 65, and about one in 10 of us will be affected by dementia. Photograph: Thinkstock

Most of us will live beyond 65, and about one in 10 of us will be affected by dementia. Photograph: Thinkstock

Tue, Jul 29, 2014, 13:51

Dementia – and its major cause, Alzheimer’s disease – has moved out of the shadows in recent years. This is due to the recognition of its place as the key contributor to serious disability in later life, and of more positive attitudes to supporting those affected by illness: the person and the family.

The biggest challenge in dementia advocacy and care is balancing the huge scale of varying needs arising from the condition, without exacerbating any negativity towards the illness.

The fear and dread of losing our memory can make the experience of the disease worse than it needs to be. Many with the condition will be affected in a relatively mild manner, and although it is clearly distressing for relatives and friends, studies also report relatively preserved quality of life for many with dementia.

Undue negativity feeds into stigma, poor political prioritisation and therapeutic nihilism, and needs to be countered.

Our stake in dementia

We all have a stake in this as most of us will live beyond 65, and thereafter about one in 10 of us will be affected by dementia. The good news is that the rate of dementia is dropping slowly, largely through better lifestyles, so the overall challenge, even in an ageing society, can be managed if we so wish.

There have been improvements in services and supports, although these are still not what they should be. Ventures such as the Alzheimer’s cafes, where people with dementia and their families can meet, and the range of services provided by the Alzheimer Society of Ireland, have been matched by an increase in the number of geriatricians and old-age psychiatrists.

Dementia and Alzheimer’s disease

Dementia is a syndrome of cognitive problems such as memory problems, altered judgment or dyspraxia, which cause a loss of social or occupational function. The most common causes of dementia include Alzheimer’s disease, vascular dementia, Lewy-body disease and fronto-temporal dementia. It is likely that all dementia after the age of 80 involves a combination of causes.

Diagnosis is still based predominantly on the clinical skills of the doctor rather than on technology. The steps are: a) a history from the person; b) a collateral history from a family member or friend regarding the onset and course of the problems, and in particular any loss of function, for example managing money, remote controls, telephone and so on; c) a physical examination; d) a memory and cognition test; and e) some standard laboratory tests.

Outside specialist hands, brain scans provide little by way of additional information, and tests involving lumbar punctures are still at the research stage and may add little to diagnostic accuracy.

The clinical skills needed require specific training, and it is worrying that the recent National Audit of Dementia Care in Irish hospitals showed relatively low levels of training and preparedness for dementia among staff (see page 14).

Early diagnosis

Regarding early diagnosis, the jury is still out on whether it is good for all. Although many advantages can be pointed out – advance planning, advice, lifestyle changes – the medications we currently have are of low efficacy, only a tiny number in later life have a remediable cause, and many are upset by the ongoing stigma of dementia. The best answer is that early diagnosis is good for those who want it.

Where should you go if you have concerns?

The first point of call should be with your GP, who may diagnose you or may choose to send you to a specialist, usually a geriatrician or old-age psychiatrist. Sometimes specialist assessment is organised as memory clinics, which, in the first instance, are largely focused on diagnosis.

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