Funder: Alzheimer's Society
Project duration: 2008 - 2011
Two thirds of general hospital beds are used by older people, many of them people with dementia. Half of all people admitted to nursing and residential homes come from general hospitals, and over half of all people in care homes have dementia. Decisions about where people with dementia should live after hospital are made quickly and are often permanent.
These decisions may not involve the person with dementia and carers may feel under pressure to quickly accept placements in care homes. Little is known of what happens to people with dementia or their carers after general hospital, often the first place their dementia is identified.
New reports and inspections have raised public concern about general hospital care for people with dementia. Research to date has followed people who are already having community care, people who are attending hospital outpatients, or people who have already entered a care home. Identifying people with dementia in general hospital, and organising care packages at that point, is an important opportunity to make a difference. Our research followed patients and their carers from this point.
To establish, for people with dementia identified in general hospital:
- What is the range of outcomes for them and their carers?
- What predicts better outcomes for people with dementia and their carers?
- What are the family and societal costs of care?
- For those people with dementia moving to a care home, what is their personal experience of this transition?
What we have done
The study identified people with dementia and followed them and their carers for one year, wherever they were discharged to. Key assessments were of quality of life, mood, carer stress and costs of care. We obtained this information by direct face-to-face interviews with people with dementia and their family carers.
The study team brought together people with a wide range of clinical, academic and personal expertise, from universities, social and medical care, and personal experience of dementia care.
We recruited our participants (112 patient/carer pairs) from two general hospitals - UHCW (Coventry) and Hospital St Cross (Rugby), between 2008 and 2010. Final 12 month follow ups were completed in March 2011. A new dissemination grant (2011-12) from the Alzheimer's Society is helping us to maximize the impact of emerging findings.
Among people with dementia referred to general hospital psychiatric services, over one third had died by 12 months, and over 80% who had been in their own home at baseline were in a care home by 6 months.
Costs of health and social care are high. Greatest costs were for general hospital admissions and care home fees.
Informal carers put very long hours into care. These carers report considerable stress. Detailed interviews with carers found major concerns about patient deterioration while in hospital, and poor advice when seeking care home placements.
She's going to have to go into a nursing home. This has been brought about by the hospital, as she's become incontinent in hospital. She wasn't before she went in.
The biggest problem that we had was to get somebody to see us for the financial side of it.......................Mom herself was fine. The move went well.
Team of researchers
Warwick Medical School
- Bart Sheehan (Principal Investigator)
- Ranjit Lall
- Nicola McHugh (Dissemination 2011-12)
- Chris Stinton
- Kate Mitchell
The Open University
- Caroline Holland
- Jeanne Katz
The University of Surrey
- Heather Gage
- Jerome Cheynel
South Staffordshire & Shropshire Healthcare NHS Foundation Trust
- Nwe Thein
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