End of life care for community dwelling older people with dementia: an integrated review.
OBJECTIVE
To review the evidence for end-of-life care for community dwelling older people with dementia (including those resident in care homes).


METHODS
An integrated review synthesised the qualitative and quantitative evidence on end-of-life care for community dwelling older people with dementia. English language studies that focused on prognostic indicators for end-of-life care, assessment, support/relief, respite and educational interventions for community dwelling older people with dementia were included. A user representative group informed decisions on the breadth of literature used. Each study selected was screened independently by two reviewers using a standardised check list.


RESULTS
Sixty eight papers were included. Only 17% (12) exclusively concerned living and dying with dementia at home. Six studies included direct evidence from people with dementia. The studies grouped into four broad categories: Dementia care towards the end of life, palliative symptom management for people with dementia, predicting the approach of death for people with dementia and decision-making. The majority of studies were descriptive. The few studies that developed dementia specific tools to guide end of life care and outcome measures specific to improve comfort and communication, demonstrated what could be achieved, and how much more needs to be done.


CONCLUSIONS
Research on end-of-life care for people with dementia has yet to develop interventions that address the particular challenges that dying with dementia poses. There is a need for investigation of interventions and outcome measures for providing end-of-life care in the settings where the majority of this population live and die.
Goodman
Claire
C
Centre for Research in Primary and Community Care, University of Hertfordshire, Hatfield, UK. c.goodman@herts.ac.uk
Evans
Catherine
C
Wilcock
Jane
J
Froggatt
Katherine
K
Drennan
Vari
V
Sampson
Elizabeth
E
Blanchard
Martin
M
Bissett
Maggie
M
Iliffe
Steve
S
D000368:Aged; D000369:Aged, 80 and over; D003657:Decision Making; D003704:Dementia / Q000451:nursing* / Q000628:therapy; D019317:Evidence-Based Medicine; D005260:Female; D016330:Frail Elderly; D006707:Homes for the Aged; D006801:Humans; D057187:Independent Living; D008297:Male; D010166:Palliative Care / Q000458:organization & administration / Q000592:standards; D013727:Terminal Care / Q000458:organization & administration / Q000592:standards