Palliative care for older people - World Health Organization ...

© Catherine Higginson7Palliative care for older people with dementiaDementia is a progressive terminal illness for whichthere is currently no cure. The prognosis may rangefrom 2 to more than 15 years, with the end-stagelasting as long as 2–3 years. One quarter of thepeople older than 85 years in Europe are estimatedto have dementia, with 4.6 million new cases ofdementia every year worldwide (one new case every7 seconds) (1). Although the frequency of dementiain low- and middle-income countries is uncertaindue to few studies and varying estimates, mostpeople with dementia live there (60% in 2001,rising to 71% by 2040) (1).As a result of ageing populations, the numberof people with dementia is predicted to doubleevery 20 years, to 81 million by 2040. The rates ofincrease vary between regions, reaching 300% inIndia, China, southern Asia and the western Pacificbetween 2001 and 2040.In the early stages of the illness, most people withdementia are cared for in the community, but morethan 95% need 24-hour care as the illness advances(2). People with dementia have cognitive, functionaland physical impairment, which gets progressivelymore severe, often over a prolonged period of time.The most frequent symptoms in the last year of lifeare cognitive impairment, urinary incontinence, pain,low mood, constipation and loss of appetite (3). Thenumber of symptoms is similar to that of peoplewith cancer, but people with dementia experiencethem for longer.The care of older people with dementia is widelyinadequate on the continuum from prevention tothe end of life. At the end of life, this inadequacyhas been summarized as: too much interventionwith little benefit (tube feeding and laboratory tests,the use of restraints and intravenous medication)or too little (poor pain control, dehydration andmalnutrition, emotional and social neglect, absenceof spiritual care and support for family caregivers)(4). There are many reasons why people withdementia do not receive adequate palliative care,including health care professionals not perceivingpeople with dementia as having a terminal conditionand difficulty in prognosis.The disease trajectory for individuals withdementia is described as a period of “prolongeddwindling”, creating difficulty in identifying whenpeople with dementia enter the palliative and endof-lifecare phase (5). Communication with peoplewith advanced dementia is difficult, which presentsparticular challenges in assessing and treatingsymptoms such as pain and ascertaining their wishesfor end-of-life care. Advance care plans need to be24