Development of The East Cheshire Hospice (TEACH) Dementia Programme
Research type
Research Study
Full title
Development of The East Cheshire Hospice (TEACH) Dementia Programme: Increasing awareness about end-of-life care.
IRAS ID
316546
Contact name
Alessandro/AB Bosco
Contact email
Sponsor organisation
University of Manchester
Clinicaltrials.gov Identifier
https://osf.io/pj5hq , Open Science Framework
Duration of Study in the UK
0 years, 6 months, 31 days
Research summary
Research Summary
Being able to meet the needs of an increasing number of people with dementia proves challenging for end-of-life services. This challenge makes care provision and access to care unclear for patients, who may find themselves unaware about when it is best time to access palliative care according to their diagnosis. In addition, there is a strong need to reach people to explore with them alternative options to inpatient hospice care, and show that palliative care may include also home care assistance, for example. The study will focus on type of care offered in hospice settings as part of dementia end-of-life care. This will help create awareness around patients’ needs and preferences. Study findings will help find examples of best practice for end-of-life care to help clinical personnel in their support journey by identifying what seems to be working well and care options offered in hospices across the UK.
The study has been funded by the East Cheshire Hospice and will last 12 months. We will recruit bereaved carers of people with dementia and clinical hospice personnel. We will use qualitative interviews with bereaved carers and we will also interview hospice clinical personnel to explore their views of hospice dementia care. The study will also involve as collaborator a person with lived experience of palliative dementia care who will ensure that our findings reflect what really happens to people with dementia and their carers accessing palliative care services. Findings from this study will help set examples of best practice in hospice care in the UK.
Summary of Results
We found that when carers’ expectations of care were not matched by either hospice staff or the physical care environment of the hospice setting (e.g., whether the environment was dementia friendly) there was a reduced level of satisfaction in carers with respect to the care received. On the contrary, when carers’ expectation was matched by the staff and or because of hospice setting being adequately dementia friendly, a more positive experience was reported from carers. Having good knowledge of palliative and end-of-life dementia care early on during disease trajectory and of dementia being a progressive condition, could help carers better handle the difficulty and unpredictability of end-of-life and palliative care.
REC name
South Central - Oxford C Research Ethics Committee
REC reference
22/SC/0362
Date of REC Opinion
14 Oct 2022
REC opinion
Further Information Favourable Opinion