Developing a Palliative Care Model for People with Dementia in the Community c/o @PallC4Dementia
Challenge
People are living longer, which means that more of us will get age-related illnesses such as dementia. Dementia is caused by different diseases of the brain. These diseases affect the parts of the brain which are normally used for learning, memory and language. Although Dementia usually affects people as they get older, it’s not a normal part of ageing. Many people don’t realise that Dementia is a terminal illness. People may die from dementia, not just die with dementia. Palliative Care aims to improve the quality of life of people and their families who are facing an incurable, life-limiting illness, such as dementia. Palliative care involves actively looking for symptoms of any kind- physical, social, spiritual, or psychological - and providing excellent care to lessen these symptoms. People with dementia need palliative care just as much as people with cancer, but they often don’t get it.Research Project (currently ongoing)
This project aims to improve the palliative care of people with dementia, and their families, by developing a “model”. This model aims to support people with dementia to live well at home in the community for as long as possible. The model will map out what services, assessments and treatments the person might need and where, so the health system can better organise their care. To develop a model that will work in Ireland, we must first learn what is already known about “good” palliative care for people with dementia. This mixed methods study will be carried out in several phases:- We will conduct a review of the literature, to find all available research in this area. This will allow us to see what existing models and services are supported by research evidence.
- We will conduct a survey of healthcare workers and researchers to ask them two things. Firstly, what do they think an ideal model of dementia palliative care would look like? And secondly, what existing services providing dementia palliative care are there?
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Phase 1: The research team designed a survey to i) identify existing models for dementia palliative care in Ireland and the UK, and ii) to identify key components of effective models. The survey is currently live on this website. The research team has also developed a protocol for a scoping review to guide their search of the literature for relevant research. The protocol is registered with PROSPERO ID: CRD42018091158, and the search is currently underway.
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@PallC4Dementia | #PallCare4DementiaFor further information contact
Email: s.fox AT ucc.ieEmail: info AT aiihpc.org
orcid.org/0000-0002-0192-8965