Supporting Family Carers to People Living With Symptoms of Dementia at Home up to the End of Life

NCT03666611 | Unknown

• 1 other identifier: sy
• Study Type: observational
• Target: 30
• Locations: 1 country
• Sites: 1

Brief Summary

This is a qualitative study that will seek to gain further understanding of the support needs of family carers to people living with symptoms of dementia up to the end of life. Family carers are friends, family members or neighbours who provide informal unpaid care to someone with symptoms of dementia. The experience of providing this care may result in family carers developing unmet needs that impact adversely on their total wellbeing. This research is potentially beneficial because little is known about the specific physical, psychological, spiritual and social needs family carers to people dying with dementia may develop. It is a priority of the UK government and the NHS to better support family carers. The government published guidelines calling on healthcare professionals to assess and address carer needs, but the evidence base for family carers to people with symptoms of dementia is limited. Findings from this study could guide healthcare professionals when they conduct clinical assessments of carer needs. Each participant to this study will be invited to attend a semi-structured interview at a venue of their choice where they will talk about their experiences of providing care. Participants must have provided informal, unpaid care to a friend, neighbour or family member with symptoms of dementia at home, including within the last twelve months of that person's life. This is a retrospective study so only former family carers will be eligible to participate. Participants must also be over the age of eighteen, be able to communicate in English and have capacity to give informed consent. This research study is being funded by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC) as part of their Research Capacity in Dementia Care Pilot Programme, which is exploring issues relating to dementia care provision.

Conditions

Family Caregivers

Keywords

Dementia; End of Life; Palliative

Outcome Measures

Primary Outcomes (1)

• To conduct interviews with family carers

  collecting interview data from up to thirty family carers

  before 31st December, 2018

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

family carers of people with dementia

You may qualify if:

• Participants may be of any gender, ethnicity or socio-economic grouping.
• Participants must be eighteen years of age or over.
• Participants must have provided informal, unpaid care or support to a family member, friend or neighbour with dementia during the last twelve months of the life of the person with dementia.
• This care may have been given on a permanent or intermittent basis.
• The person with dementia must have died not less than six months and not more than five years prior to the date of the interview.
• Participants must be able to communicate in English.
• Participants must have capacity to provide informed consent.
• Participants must live, or be able to attend an interview, in North West England, West Yorkshire, The West Midlands or North Wales.

You may not qualify if:

• They did not give any form of informal unpaid care or support to a person with dementia in the twelve months before that person's death.
• The person they cared for died less than six months or more than five years before the date of the interview.
• They are under eighteen years of age.
• They cannot communicate clearly in English.
• They are unable or unwilling to provide informed consent.
• They do not live, or are unable to attend an interview, in North West England, West Yorkshire, the West Midlands or North Wales.

Sponsors & Collaborators

• University of Manchester: lead

Study Sites (1)

University of Manchester

Manchester, M13 9PL, United Kingdom

RECRUITING

MeSH Terms

Conditions

Dementia; Death

Condition Hierarchy (Ancestors)

Brain Diseases; Central Nervous System Diseases; Nervous System Diseases; Neurocognitive Disorders; Mental Disorders; Pathologic Processes; Pathological Conditions, Signs and Symptoms

Central Study Contacts

Sara E Yearsley, Ms

CONTACT

07905203832; sara.yearsley@manchester.ac.uk

Study Design

• Study Type: observational
• Observational Model: OTHER
• Time Perspective: RETROSPECTIVE
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: PhD research assistant

Study Record Dates

• First Submitted: September 9, 2018
• First Posted: September 12, 2018
• Study Start: October 11, 2017
• Primary Completion: December 31, 2018
• Study Completion: December 31, 2018
• Last Updated: September 12, 2018

Record last verified: 2018-09

Data Sharing

• IPD Sharing: Will not share

Locations

GB (1)