Exploring how people with dementia are supported to live independently
Research type
Research Study
Full title
Qualitative study exploring how people with dementia are supported to live independently at home: Stream one of NIDUS (New Interventions for Independence in Dementia) study
IRAS ID
231047
Contact name
Claudia Cooper
Contact email
Sponsor organisation
UCL
Clinicaltrials.gov Identifier
Z6364106/2017/07/76 social research, UCL data protection
Duration of Study in the UK
1 years, 11 months, 31 days
Research summary
Our study is funded by the Alzheimer’s society and will inform and support their fix dementia care campaign.
This application is for part one of a larger programme, in which we plan to co-produce interventions with people with dementia, family carers and professionals to improve the support received by people living with dementia in their own homes.
In this study, we plan to explore how people can be best supported to live well with dementia in their own homes using qualitative methods. We will recruit through NHS trusts, home care agencies and third sector carer support organisations we have links with. Researchers will only have contact details for professionals, clients with dementia and family carers who agree to be contacted about the study.
Non-participant observations: Trained, supervised researchers will observe 6-10 home care workers during their visits with around 30-40 clients with dementia in their homes, for up to five visits each. We will use structured observation sheets developed by the co-applicants.
In-depth qualitative interviews: We will interview around 10 people living with dementia, 10 family carers, and 10 health and social care professionals who are key stakeholders/commissioners in dementia community care; and 5 home care service managers and 15 home care workers. We will ask interviewees about what living independently with dementia means, what support makes a difference, and what we should include in our future planned interventions for people with dementia, family carers and paid home carers. Interviews will be based on topic guides, recorded, transcribed and analysed using standard qualitative techniques.
We will obtain informed consent from everyone observed or interviewed who is able to decide whether to take part. We will include people living with dementia who do not have capacity to consent, and will abide by the Mental Capacity Act where we do so.
REC name
London - Camden & Kings Cross Research Ethics Committee
REC reference
17/LO/1713
Date of REC Opinion
24 Nov 2017
REC opinion
Further Information Favourable Opinion