Caregiver preparedness for death in dementia: an evaluation of existing tools

Abstract

Objectives: Death preparedness amongst family caregivers (CG) is a valuable and measurable concept. Preparedness predicts CG outcomes in bereavement and is modifiable through a palliative approach which includes advance care planning (ACP) interventions. Improving death preparedness is important for CGs of persons with dementia (PwD) whom are more likely to develop negative outcomes in bereavement, and experience less than adequate palliative care. However, the adequacy of existing tools to measure death preparedness in CGs of PwD is unknown, which limits intervention design and prospective evaluation of ACP effectiveness.

Methods: We conducted a review and evaluation of existing tools measuring the attribute domains and traits of CG death preparedness. Literature was searched for articles describing caregiving at end of life (EOL). Measurement tools were extracted, screened for inclusion criteria, and data extracted regarding: conceptual basis, population of development, and psychometrics. Tool content was compared to preparedness domains/traits to assess congruency and evaluate the adequacy of tools as measures of death preparedness for CGs of PwD.

Results: Authors extracted 569 tools from articles, retaining seven tools for evaluation. The majority of tools, n = 5 (70%) did not sample all preparedness domains/traits. Few tools had items specific to EOL; only one tool had a specific item questioning CG preparedness for death, and only one tool had items specific to dementia.

Conclusion: Limitations in existing tools suggest they are not adequate measures of death preparedness for CGs of PwD. Consequently, the authors are currently developing a questionnaire to be titled, ‘Caring Ahead’ for this purpose.

Keywords:

• Death preparedness
• dementia and cognitive disorders
• advance care planning
• easurement instrument

Disclosure statement

The authors have no conflicts of interest to report.

Additional information

Funding

The authors are grateful for support obtained through grants and student scholarships from the Alzheimer Society of Canada Brant, Haldimand Norfolk, Hamilton Halton Branch; the Canadian Nurses Foundation 10.13039/100009271; Canadian Frailty Network IFP 2018-0315926; Canadian Institutes of Health Research 159269; Registered Nurses Foundation of Ontario 10.13039/501100005109; Shalom Village Nursing Home.