N/A
N=150
Experiencing Loss and Planning Ahead Study
Grief
Bottom Line
View on ClinicalTrials.gov: NCT03332979 ↗Enrolled (actual)
150
Serious AEs
0.0%
Results posted
Oct 2020
Primary outcome: Primary: Pre-death Grief in Dementia Caregiving — 57.6 score on a scale — p=<0.05
Study Design & Population
- Study type
- Observational
- Phase
- N/A
- Interventions
- —
- Age
- Adult, Older Adult · 18+ yrs
- Sex
- All
- Sponsor
- University College, London
- Primary completion
- Jan 2019
Outcome Measures
| Outcome | Result | p-value |
|---|---|---|
| PRIMARY Pre-death Grief in Dementia Caregiving |
57.6 | <0.05 sig |
| SECONDARY Knowledge of How Dementia Progresses |
34.8 | — |
| SECONDARY Knowledge of the Person With Dementia's End of Life Preferences |
110; 29; 11 | — |
| SECONDARY Advance Decisions in Place for Person With Dementia |
63; 8; 79 | — |
| SECONDARY Communication With Healthcare Providers |
2.7 | — |
| SECONDARY Social Support for Health Subscale of the Health Literacy Questionnaire |
2.7 | — |
| SECONDARY Dementia Severity |
4; 34; 64; 48 | — |
| SECONDARY Intrinsic Religiosity |
6.6 | — |
Summary
The course of dementia over many years, gradual losses and uncertain life expectancy can lead to grief amongst family and friend carers. This study aims to examine the relationship between carers' feelings of grief before the death of a person with dementia and how well carers are prepared for that death. The study involves completing questionnaires with 150 carers of people with dementia (at home or in a care home). Twenty of these carers will be purposively selected to complete additional semi-structured questions to further explore the research questions. The questionnaires will examine whether being prepared for end of life is linked to having lower levels of grief. Preparation will be measured by important factors shown in research including: knowledge of dementia progression; knowledge of the person with dementia's end of life preferences; communication with healthcare professionals; family support; and having a Power of Attorney or advance directives. The study is part of a larger study that will also involve surveys with service providers and developing a resource for carers. The study will provide important insights into how we can better support grieving carers and help them plan and prepare for end of life care.
Eligibility Criteria
Inclusion Criteria
- Carers of people with dementia providing practical, social, emotional or supervisory support to a friend or family member. This will include carers of people with dementia living at home or in a care home. Carers will be 18 years of age or over and living in England. The person they care for will have received a formal diagnosis of any dementia related disease.
Exclusion Criteria
- Carers who are not able to communicate in English or who do not have capacity to provide informed written consent.
Data sourced from ClinicalTrials.gov (NCT03332979). Outcome figures and adverse-event rates are extracted automatically from the registry's posted results and are provided for clinician reference, not as a substitute for the primary publication.