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
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).
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.
Most clinicians would rather see these develop into memory services, which would provide support from diagnosis, through the course of the illness, to palliation at the end. Some exciting project work on joined-up dementia assessment and care is happening in Clonmel and Kinsale to bring together general practice, community services, geriatric medicine and old-age psychiatry, which could provide a model for the rest of the State.
Services for the important minority who develop dementia before the age of 65 remain particularly under-developed.
Practical advice and support
Dementia is a complex syndrome, with a highly individual course in each person. Management needs to be individualised, and a good starting point is information.
The Alzheimer Society of Ireland (alzheimer.ie) has an excellent series of leaflets, and I often recommend Anne Davis Basting’s Forget Memory (2010), which gives helpful approaches to engaging positively with the person with dementia.
Her emphasis on helping the person with dementia to keep doing the activities they enjoy for as long as they can is a cornerstone of keeping life as full as possible.
The medications available for dementia are of limited efficacy, but worth trying on the basis of stopping if there is no apparent benefit: no nutritional supplement at this stage has been shown to be helpful.
Advance planning is a further element, from driving – which may be possible in the earliest stages of dementia with regular on-road tests but which will eventually have to cease – through financial matters to advance care planning.
and psychological symptoms The onset of behavioural and psychological symptoms is one of the most challenging areas, but here expert advice can be helpful. All behaviour has a reason, and the person with dementia may be trying to tell us something. For example, a recent study showing
less behavioural disturbance among nursing home patients who were given regular paracetomol suggests that unrecognised pain may be a spark for some. The 36-Hour Day, by Nancy Mace and Peter Rabins (2012), is a helpful information back-up, drawing on the experience of countless carers.
The final stages
Although not inevitable, the commonest precipitant for nursing home care is dementia, and one of the major imperatives of the forthcoming National Dementia Strategy should be to ensure that dementia care training is a core skill for nursing home staff. Palliative approaches to dementia care are still being teased out, with feeding and swallow problems a core area needing attention.
The dedication of much of this edition of Health+Family supplement to dementia is a marker of a more open, positive and proactive approach by Irish society to dementia, without in any way minimising the impact of the illness. This identification with our frailty and finitude, rather than running away from it as we did in the past, is a key part of attaining a more dementia-attuned society. A similar shift took place in the 1970s in relation to cancer, with a sea- change in how we support people with cancer and fund their services. Those among us with dementia, and those of us who will have it in the future, deserve nothing less.
Prof Des O’Neill is a consultant in geriatric and stroke medicine and an Irish Times columnist.