Caring for people with dementia

In the accompanying prospective cohort study, Xie and colleagues show that people can live for several years after being diagnosed as having dementia and many are already frail at the time of diagnosis.1 The authors estimated survival times after the onset of dementia in 438 people according to age, self reported health, disability, and severity of cognitive impairment. The estimated median survival time from the onset of dementia was 4.1 years (interquartile range 2.5-7.6) for men and 4.6 years (2.9-7.0) for women. Survival between the youngest (56-69 years) and oldest people (≥90 years) differed by nearly seven years. Sex, age of onset, and disability significantly predicted mortality in the presence of dementia. The study shows that dementia is a terminal condition, the course of which unfolds with coexisting age related impairment and ill health. The study provides clear evidence that people with dementia need coordinated care and support from a range of professionals and practitioners from diagnosis to death to ensure maximum quality of life and prevent unnecessary disability and suffering.

During the past 30 years, substantial advanceshave been made in understanding how best to support people living with dementia. Until recently, dementia was viewed as a “living death” about which little could be done beyond custodial care. In November 2006, the National Institute for Health and Clinical Excellence together with the Social Care Institute for Excellence published the first guideline on the care of dementia.2 It proposed pathways to tackle the social and medical aspects of living with dementia. The guideline is a first step towards rectifying the fact that the United Kingdom fails to provide adequate care for people with dementia despite evidence that well organised care reduces disability.3 4

Doctors occupy a unique vantage point for ensuring optimal quality of care for people with dementia and their families. Both the patient with dementia and their carer—many of whom live together—need to be provided for. Doctors have a part to play in promoting quality of care from diagnosis until death, through assessment of changes in cognitive functioning—such as memory, day to day functioning, and behaviour—alongside identification and treatment of comorbidities. Referral to specialist psychological and psychosocial services is integral to provision of high quality care.4

Many people with dementia and their families wait years for a diagnosis, and some never receive one.4 Primary care doctors often defer the diagnosis because they think it is futile—that the condition is not treatable, it carries stigma, and it will leave people feeling hopeless.

Doctors have a part to play in responding to concerns about changes in cognition including memory, behaviour, and day to day functioning. This requires comprehensive assessment to identify the underlying cause, which may include pain; infection; dehydration; side effects of drugs; or unmet psychosocial needs, such as lack of human contact or meaningful engagement.5 Assessing and treating the cause may reduce inappropriate use of tranquilising drugs.6 Doctors also need to assess and treat comorbidities; this may prevent unnecessary admissions to hospital and associated excess disability.7 People with dementia are more likely to be admitted to hospital and to have longer stays in hospital than people without dementia,7 which may reduce quality of life and cognitive and functional ability.7 Promoting awareness of the many psychosocial supports and services that can improve quality of life may help to counteract doctors’, patients’, and carers’ sense of futility.

Health care and social care for people with dementia and their families is most effective when provided in partnership with organisations in the private and voluntary sector, such as the Alzheimer’s Society.4 Research from the US shows that much of the distress experienced by people with dementia and their families can be prevented when primary care works closely with geriatric nurse practitioners and community and voluntary services.8 9 Working in partnership with people with dementia and their families is now the expected norm.

In planning care and support, doctors need to pay as much attention to the essential human worth of a person with dementia and their retained capacity for relationships, pleasure, communication, and coping as they do to deficits and dysfunction.101112 They also need to be aware of the growing evidence base for therapeutic intervention and effective support to minimise disability and promote optimal quality of life.234