Dementia overview: improving stigma and services

Dementia - and its major cause, Alzheimer’s disease - has increasingly moved out of the shadows in recent years, a due recognition of its place as the key contributor to serious disability in later life, but also 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 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 condition will be affected in a relatively mild manner, and although clearly distressing to relatives and friends, studies also report relatively preserved quality of life for many with dementia. Undue negativity feeds into stigma, poor political prioritization and therapeutic nihilism, and needs to be combated.

We all have a stake in this as most of us will live beyond 65, and thereafter about 1 in 10 of us will be affected by dementia. The good news is that the rate of dementia is dropping slowly, largely through better life-styles so the overall challenge, even in an ageing society, can be managed - if we so will it.

And there have been improvements in services and supports, although still short of where they should be. Ventures such as the Alzheimer’s Cafés where those with dementia and their families can meet, the range of services from the Alzheimer’s Society of Ireland, have been matched by an increase in the number of geriatricians and old age psychiatrists.

CAUSES, SIGNS AND SYMPTOMS

Dementia is a syndrome of cognitive problems (such as memory problems, altered judgement or dyspraxia) which cause a loss of social or work function. The commonest 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 technology. The steps are a) a history from the person; b) a collateral history from a family member or friend (as to the onset and course of the problems, and in particular as to any loss of function, eg, managing money, remote controls, telephone, etc); c) a physical examination; d) a memory and cognition test, and e) some standard laboratory tests.

Outside of 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.

DIAGNOSIS

The jury is still out as to whether early diagnosis is good for all. Although many advantages can be pointed out - advance planning, advice, life-style change - 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.

The first point of call should be with your GP. He/she may diagnose you or may choose to send you to a specialist (usually a geriatrician or old age psychiatrist). Sometimes specialist assessment is organized as Memory Clinics, which in the first instance were largely focussed 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 country. Services for the important minority who develop dementia before the age of 65 remain particularly under-developed.

TREATMENT AND CARE

Dementia is a complex syndrome, with a highly individual course in each person. Management needs to be individualized, and a good starting point is information. The Alzheimer Society of Ireland (www.alzheimer.ie) has an excellent series of leaflets, and I often recommend Anne Basting’s Forget Memory, 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 that he/she enjoys for as long as possible is a corner-stone 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 of 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 advnace care planning.

The onset of behavioural and psychological symptoms is one of the most challenging areas, but here expert advice through old age psychiatry or geriatric medicine 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 showed less behavioural disturbance among nursing home patients given regular paracetomol suggests that unrecognized pain may be a spark for some. The 36-Hour Day is a helpful information back-up, drawing on the experience of countless carers.

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 of attention.

The appearance of this article on dementia in the Health Centre in itself is a marker of a more open, positive and pro-active approach by Irish society to dementia, without in any way minimizing 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 1970’s for cancer, with a sea-change in how we support those 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.

USEFUL RESOURCES

Alzheimer Society of Ireland: www.alzheimer.ie

Alzheimer Cafés http://www.alzheimercafe.ie/

Recommended reading

Basting A. Forget Memory: Creating Better Lives for People with Dementia. Johns Hopkins University Press, 2010.

Mace, N, Rabins R. The 36-Hour Day. Grand Central Publishing, 2012.

O’Neill D. Ageing and Caring. Orpen Press, 2012.

Prof Des O’Neill is a geriatrician