International Psychogeriatrics

Research Article

The needs of people with dementia in care homes: the perspectives of users, staff and family caregivers

Martin Orrella1 c1, Geraldine A. Hancocka1, Kumari C. Galboda Liyanagea2, Bob Woodsa3, David Challisa4 and Juanita Hoea1

a1 Department of Mental Health Sciences, University College London, U.K.

a2 Mascalls Park, North East London Mental Health Trust, Brentwood, Essex, U.K.

a3 Dementia Services Development Centre, University of Wales Bangor, Bangor, U.K.

a4 Personal Social Services Research Unit, University of Manchester, Manchester, U.K.

ABSTRACT

Background: People with dementia in care homes are at risk of having their views ignored and decisions are often made on their behalf by care home staff and family carers. The aim of this study was to compare the ratings of needs of older people with dementia living in care homes, as assessed by the older person themselves, a family caregiver, and the staff of the care home.

Method: The Camberwell Assessment of Need for the Elderly (CANE) was completed for 238 residents with dementia by care staff. In addition, 149 users and 81 family caregivers also completed the assessment of the person's met and unmet needs.

Results: Many users were able to report their met and unmet needs despite having moderately severe dementia. The views of the person with dementia were commonly in agreement with the staff and family carers' views. However, user and carer pairs had the lowest average percentage agreement of 63% compared to that of 77% between user and staff pairs. In particular, users reported relatively higher unmet needs for psychological distress, company and information, and high unmet needs for daytime activities and eyesight/hearing problems.

Conclusions: Users' views on their needs should be sought even when the person has dementia and lives in a care home. Reliance solely on assessment by staff or carers may lead to under recognition of unmet needs.

(Received November 13 2007)

(Revised December 17 2007)

(Revised February 18 2008)

(Accepted February 25 2008)

(Online publication April 17 2008)

Correspondence:

c1 Correspondence should be addressed to: Professor Martin Orrell, Department of Mental Health Sciences, University College London, Charles Bell House, 67–73 Riding House Street, London, W1W 7EJ, U.K. Phone: +44 (0)20 769 9452; Fax: +44 (0)20 769 9426. Email: m.orrell@ucl.ac.uk.