Caring ahead: Mixed methods development of a questionnaire to measure caregiver preparedness for end-of-life with dementia

Abstract

Background: Family caregivers of persons with dementia often feel unprepared for end-of-life and preparedness predicts caregiver outcomes in bereavement. Existing questionnaires assessing preparedness have limitations. A multi-dimensional questionnaire assessing family caregiver preparedness for the end-of-life of persons with dementia is needed to identify caregivers at risk for negative outcomes in bereavement and evaluate the quality of strategies within a palliative approach. Aim: To develop a multi-dimensional questionnaire titled ‘Caring Ahead’ to assess feelings of preparedness for end-of-life in family caregivers of persons with dementia. Design: A mixed methods, sequential design employed semi-structured interviews, a Delphi-survey and pilot-testing of the questionnaire, June 2018 to July 2019. Setting/population: Participants included five current and 16 bereaved family caregivers of persons with symptoms advanced dementia from long-term care homes in Ontario, Canada; and 12 professional experts from clinical and academic settings in Canada, Europe, United States. Results: Interviews generated three core concepts and 114 indicators of preparedness sampling cognitive, affective and behavioural traits in four domains (i.e., medical, psychosocial, spiritual, practical). Indicators were translated and reduced to a pool of 73 potential questionnaire items. 30-items were selected to create the ‘Caring Ahead’ preparedness questionnaire through a Delphi-survey. Items were revised through a pilot-test with cognitive interviewing. Conclusions: Family caregivers’ feelings of preparedness for end-of-life need to be assessed and the quality of strategies within a palliative approach evaluated. Future psychometric testing of the Caring Ahead questionnaire will evaluate evidence for validity and reliability.

A mixed methods evaluation of a program exploring predeath grief and loss for carers of people with rarer dementias

“…A 20-item measure to assess how prepared carers feel for the end of life of the person with dementia they care for (Durepos et al, 2021). A higher score indicates being more prepared for the end of life of the person with dementia.…”

Cultural adaptation and validation of the Quality of Dying in Long‐term Care (QoD‐LTC and QoD‐LTC‐C) scales by caregivers in nursing homes

“…8 In many cases, families are not completely aware of the resident's clinical condition or are not prepared for the resident's death. 11,12 Previous research reports that families do not usually talk with residents about the resident's death, which indicates that they are not aware of residents' thoughts, fears, and desires regarding end-of-life. 13,14 Different instruments have been developed for the evaluation of various aspects related to QOD, but there is a lack of tools that evaluate this concept in long-term care centres, such as nursing homes.…”

“…In many cases, families are not completely aware of the resident's clinical condition or are not prepared for the resident's death 11,12 . Previous research reports that families do not usually talk with residents about the resident's death, which indicates that they are not aware of residents’ thoughts, fears, and desires regarding end‐of‐life 13,14 …”

Developing a question prompt list for family caregivers concerning the progression and palliative care needs of nursing home residents living with dementia

“…Second, research points to overall inadequacies in the quality and quantity of dementia related information provided to residents and family caregivers [ [18] , [19] , [20] ], which can contribute to erroneous expectations and understanding regarding care. When family caregivers of persons with dementia have not previously engaged in conversations with HCPs about the clinical course of dementia, they may have difficulty anticipating the future care needs of their family member/friend and may not feel adequately prepared for the end of life [ [21] , [22] , [23] , [24] ]. This lack of ensuing dialogue between HCPs and family caregivers is problematic for both the resident and family member.…”