TY - JOUR

T1 - End of life care for community dwelling older people with dementia : an integrated review.

AU - Goodman, Claire

AU - Evans, Catherine

AU - Wilcock, Jane

AU - Froggatt, Katherine

AU - Drennan, Vari

AU - Sampson, Elizabeth

AU - Blanchard, Martin

AU - Bissett, Maggie

AU - Iliffe, Steve

PY - 2010/4

Y1 - 2010/4

N2 - Objective To review the evidence for end-of-life care for community dwelling older people with dementia (including those resident in care homes). Design 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.

AB - Objective To review the evidence for end-of-life care for community dwelling older people with dementia (including those resident in care homes). Design 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.

KW - dementia • end-of-life care • community dwelling older people

U2 - 10.1002/gps.2343

DO - 10.1002/gps.2343

M3 - Journal article

VL - 25

SP - 329

EP - 337

JO - International Journal of Geriatric Psychiatry

JF - International Journal of Geriatric Psychiatry

SN - 0885-6230

IS - 4

ER -