Original Study
A Family Booklet About Comfort Care in Advanced Dementia: Three-Country Evaluation

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Abstract

Objectives

To evaluate a booklet on comfort care in dementia from the perspective of family with relevant experience, and assess nursing home resident and family factors associated with evaluations.

Design

Retrospective study.

Setting

Long term care facilities in French-speaking Canada, and the Netherlands and Italy.

Participants

Bereaved family (n = 138).

Measurements

An 8-item scale assessed the booklet’s acceptability. Usefulness was rated on a 0 to 10 scale, and perceived usefulness referred to usefulness if family had had the booklet during the resident’s stay. Families indicated preferred ways of obtaining, and the most appropriate time to get the booklet.

Results

Almost all families (94%) perceived the booklet as useful. Canadian and Dutch families evaluated the booklet’s contents and format favorably, whereas Italian families’ evaluations were less favorable. Almost all families endorsed roles for physicians or nurses and about half additionally accepted availability through own initiative, in print or through the Internet. Preference of timing was highly variable. Better acceptability, usefulness, and availability through own initiative were independently associated with non-Italian nationality, presence of more physical signs discussed in the booklet, feeling ill-prepared, and higher satisfaction with care. A preference of receiving the booklet early was more likely in Italian families, those without university education, and those involved with older residents.

Conclusion

The booklet is suitable to inform Dutch and Canadian families on comfort care in dementia, but implementation in Italy requires further consideration. The booklet may be integrated in advance care planning in long term care, and made available outside long term care settings to serve families who wish to be informed early.

Section snippets

Methods

An international research team has been involved in translating, adapting, and evaluating the booklet.18 Mainstays and aims of all versions were the same (Box 1), and all were structured according to questions and answers. The Dutch version copied the layout of the original Canadian version. Photographs and colors in the Italian version were modified using pictures of Italian settings.

Results

Table 1 shows that patients’ demographics did not differ among decedents from Canada, the Netherlands, and Italy. Mean length of stay in the Netherlands, however, was less than half of length of stay in Italy (2.0 versus 4.2 years) and also shorter than in Canada (3.1 years). Shortness of breath was most commonly reported in Italian patients. Feeding difficulties were less common in Dutch residents. Table 2 shows that family caregivers’ demographics did not differ among the 3 settings except

Discussion

We evaluated a booklet on comfort care in dementia from the perspective of families who have experienced death of their loved one in a long term care setting. Need for and perceived usefulness of the booklet was almost universally acknowledged. There was great support for its contents in the development setting (French-speaking Canada) and in the 2 European countries in the study. The results suggest that the booklet has the potential to help many families who face common challenges in

Conclusion

The booklet is suitable to inform Dutch and Canadian families on comfort care in dementia. Implementation in Italy requires further consideration and possible adaptation. We recommend integrating the booklet in advance care planning if families are receptive, and because preferences vary and depend on the later course of the disease, to also make it available before nursing home admission.

References (41)

  • S. Forbes et al.

    End-of-life decision making for nursing home residents with dementia

    J Nurs Scholarsh

    (2000)
  • C.E. Gessert et al.

    Planning end-of-life care for patients with dementia: roles of families and health professionals

    Omega (Westport)

    (2000)
  • C. Caron et al.

    Creating a partnership with families in decision making for end-of-life care in Alzheimer disease: The perspective of family caregivers

    Dementia

    (2005)
  • C. Caron et al.

    Decision making at the end of life in dementia: How family caregivers perceive their interactions with health care providers in long-term- care settings

    J Appl Gerontol

    (2005)
  • H. Biola et al.

    Physician communication with family caregivers of long-term care residents at the end of life

    J Am Geriatr Soc

    (2007)
  • J. Hennings et al.

    Approaching the end of life and dying with dementia in care homes: The accounts of family carers

    Rev Clin Gerontol

    (2010)
  • E. Chang et al.

    Evaluation of an information booklet for caregivers of people with dementia: An Australian perspective

    Nurs Health Sci

    (2010)
  • Arcand M, Caron C. Comfort Care at the End of Life for Persons with Alzheimer’s Disease or Other Degenerative Diseases...
  • G. Elwyn et al.

    International Patient Decision Aids Standards (IPDAS) Collaboration. Developing a quality criteria framework for patient decision aids: Online international Delphi consensus process

    BMJ

    (2006)
  • Hewitt M, Simone JV, eds. Ensuring Quality Cancer Care. Washington DC: National Academies Press, 1999. In: Davies E and...
  • Cited by (0)

    This work was supported by the Research Center on Aging from the Health and Social Services Centre-University Institute of Geriatrics of Sherbrooke (Canada), the Lino Maestroni Foundation—Palliative Medicine Research Institute (Italy), the national insurance companies Agis Zorgverzekeringen and Fonds NutsOhra, and by Stichting Sluyterman van Loo – stimuleringsfonds ouderenprojecten (national agency that supports projects focused on wellbeing of the elderly) (the Netherlands). J.T.S. was supported by the Netherlands Organisation for Scientific Research (NWO, the Hague; Innovational Research Incentives Scheme, a career award to J.T.S. [grant number Veni 916.66.073]), and the Department of Nursing Home Medicine, and the Department of Public and Occupational Health of the EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam.

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