Older People with Learning Disability - VERSION 1.0 - REC 14/LO/0048
Research type
Research Study
Full title
Exploring the role and significance of specialist care facilities for older people with learning disabilities at the latter stages of their lives.
IRAS ID
144944
Contact name
Rachel Forrester-Jones
Contact email
Sponsor organisation
University of Kent
Research summary
The increased longevity of individuals with learning disabilities (Holland, 2000) and the consequent increase in dementia in these populations (Cooper et al., 1997) means that specialist service providers now face the challenge of providing sufficient services and resources for the support of this disease and its associated difficulties (Janicki & Dalton, 2000). However, the age-related health and social care needs of this population have yet to be fully understood and addressed. Although there is some evidence of positive development, the current picture of service provision is characterized by fragmentation and limited choice of resources and specialist care.
The charity, Fynvola Foundation, runs Lady Dane Farmhouse, (known as Fynvola). Fynvola is a home for older people with learning disabilities and multiple needs including dementia which provides high dependency nursing and care for people to the end of their lives. The ideology behind Fynvola is that residents are valued, treated as individuals, and enjoy a happy and lively environment, ending their days in comfortable surroundings, secure in the knowledge that they will receive the best possible nursing and palliative care. The home also provides opportunities for respite, crisis situations and convalescence. To date, Fynvola has been running for three years, accommodating up to 15 residents and there are opportunities for activities in a specialist activity centre. Fynvola is believed to be the first specialised nursing establishment of its kind in the UK.
Using a case-study model at the request of Fynvola trustees, the aim of the research is to describe and map the philosophy, organisation and running and costs of Fynvola and to investigate the quality of life of people who live there. The objective is to find out whether this type of new specialist service provides a positive environment for people who live there as well as their carers/family members and staff. It is hoped that the results of this case study will enable us to recommend whether this type of specialist care provision should be replicated elsewhere and to offer suggestions as to how the wellbeing of older people who are in the later and last stages of their lives can be improved using this model.REC name
London - Queen Square Research Ethics Committee
REC reference
14/LO/0048
Date of REC Opinion
19 Feb 2014
REC opinion
Further Information Favourable Opinion