Development and testing of an informative guide about palliative care for family caregivers of people with advanced dementia

Lina Riedl, Manuela Bertok, Julia Hartmann, Julia Fischer, Carola Rossmeier, Andreas Dinkel, Marion Ortner, Janine Diehl-Schmid, Lina Riedl, Manuela Bertok, Julia Hartmann, Julia Fischer, Carola Rossmeier, Andreas Dinkel, Marion Ortner, Janine Diehl-Schmid

Abstract

Background: Since people with advanced dementia are usually not able to make complex decisions, it is usually the family caregivers, as proxies, who have to decide on treatments and their termination. However, these decisions are difficult for the caregivers to make, as they are often inadequately informed and cannot properly assess the consequences; moreover, they are concerned about harming the sick person. We aimed to first develop an informative booklet about palliative care issues for caregivers of people with advanced dementia. Secondly, we aimed to investigate a change in family caregivers' knowledge regarding palliative care issues and caregivers' involvement in medical and care decisions before and after studying this booklet.

Methods: A first version of the booklet was drafted by an experienced psychiatrist and palliative care specialist based on existing booklets and guidelines; necessary cultural adaptions were taken into consideration. A nominal group process was conducted to develop the informative guide. In order to investigate the acceptance of the booklet and the possibility to implement it, 38 patient-caregiver dyads were recruited, and caregivers were interviewed both before receiving the booklet and after 3 months of receiving the booklet.

Results: Experts from various disciplines collaborated on a German booklet for family caregivers of people with advanced dementia as an information aid regarding issues of palliative care. The subsequent test showed that all caregivers had experienced a personal benefit from the booklet. Caregivers had a significant gain of knowledge after provision of the booklet. A large proportion of caregivers who had not previously considered and/or discussed medical topics reported that they had done so within 3 months after obtaining the booklet, or planned to do so in the near future.

Conclusions: The caregivers valued the comprehensible, concise and well-structured information guide on palliative care issues in advanced dementia. They agreed it increases knowledge and prompts decision making and therefore should be developed in many languages and disseminated among family caregivers of people with dementia.

Trial registration: clinicaltrial.gov, NCT03548142. Retrospectively registered 7 June 2018.

Keywords: Advanced dementia; Decision making; Involvement in care decisions; Palliative care.

Conflict of interest statement

The authors declare that they have no competing interests.

References

    1. Mitchell SL. Advanced dementia. N Engl J Med. 2015;372:2533–2540. doi: 10.1056/NEJMcp1412652.
    1. WHO. WHO | WHO Dementia fact sheet: WHO; 2019. . Accessed 16 Aug 2019.
    1. Cerejeira J, Lagarto L, Mukaetova-Ladinska EB. Behavioral and psychological symptoms of dementia. Front Neurol. 2012;3. 10.3389/fneur.2012.00073.
    1. Brunnström HR, Englund EM. Cause of death in patients with dementia disorders. Eur J Neurol. 2009;16:488–492. doi: 10.1111/j.1468-1331.2008.02503.x.
    1. WHO. WHO | WHO Definition of Palliative Care. WHO. 2012. . Accessed 31 May 2019.
    1. Piers R, Albers G, Gilissen J, De Lepeleire J, Steyaert J, Van Mechelen W, et al. Advance care planning in dementia: recommendations for healthcare professionals. BMC Palliat Care. 2018;17. 10.1186/s12904-018-0332-2.
    1. Givens JL, Kiely DK, Carey K, Mitchell SL. Healthcare proxies of nursing home residents with advanced dementia: decisions they confront and their satisfaction with decision-making. J Am Geriatr Soc. 2009;57:1149–1155. doi: 10.1111/j.1532-5415.2009.02304.x.
    1. Hebert RS, Dang Q, Schulz R. Preparedness for the death of a loved one and mental health in bereaved caregivers of patients with dementia: findings from the REACH study. J Palliat Med. 2006;9:683–693. doi: 10.1089/jpm.2006.9.683.
    1. Michalowsky B, Kaczynski A, Hoffmann W. Ökonomische und gesellschaftliche Herausforderungen der Demenz in Deutschland – Eine Metaanalyse. Bundesgesundheitsbl Gesundheitsforsch Gesundheitsschutz. 2019;62:981–992. doi: 10.1007/s00103-019-02985-z.
    1. Chang E, Easterbrook S, Hancock K, Johnson A, Davidson P. Evaluation of an information booklet for caregivers of people with dementia: an Australian perspective. Nurs Health Sci. 2010;12:45–51. doi: 10.1111/j.1442-2018.2009.00486.x.
    1. Arcand M, Brazil K, Nakanishi M, Nakashima T, Alix M, Desson J-F, et al. Educating families about end-of-life care in advanced dementia: acceptability of a Canadian family booklet to nurses from Canada, France, and Japan. Int J Palliat Nurs. 2013;19:67–74. doi: 10.12968/ijpn.2013.19.2.67.
    1. Nakanishi M, Miyamoto Y, Long CO, Arcand M. A Japanese booklet about palliative care for advanced dementia in nursing homes. Int J Palliat Nurs. 2015;21:385–391. doi: 10.12968/ijpn.2015.21.8.385.
    1. WHO. WHO | WHO 10 facts on dementia. WHO. 2019. . Accessed 16 Aug 2019.
    1. Arcand M, Caron C. Comfort care at the end of life for persons with Alzheimer’s disease or other degenerative diseases of the brain. A guide for caregivers. 2005.
    1. Delbecq AL, Van de Ven AH, Gustafson DH. Group techniques for program planning: a guide to nominal groups and Delphi process. Illinois: Scott Foresman Company Glenview; 1975.
    1. Lerman CE, Brody DS, Caputo GC, Smith DG, Lazaro CG, Wolfson HG. Patients’ perceived involvement in care scale: relationship to attitudes about illness and medical care. J Gen Intern Med. 1990;5:29–33. doi: 10.1007/BF02602306.
    1. Folstein MF, Folstein SE, McHugh PR. “Mini-mental state”. A practical method for grading the cognitive state of patients for the clinician. J Psychiatr Res. 1975;12:189–198. doi: 10.1016/0022-3956(75)90026-6.
    1. Morris JC. The clinical dementia rating (CDR): current version and scoring rules. Neurology. 1993;43:2412–2414. doi: 10.1212/WNL.43.11.2412-a.
    1. Langer I, Schulz von Thun F. Messung komplexer Merkmale in Psychologie und Pädagogik: Ratingverfahren. München: Ernst Reinhard; 1974.
    1. Beleites E. Grundsätze der Bundesärztekammer zur ärztlichen Sterbebegleitung. In: Wienke A, Lippert H-D, editors. Der Wille des Menschen zwischen Leben und Sterben — Patientenverfügung und Vorsorgevollmacht. Berlin, Heidelberg: Springer Berlin Heidelberg; 2001. pp. 65–73.
    1. Einterz SF, Gilliam R, Lin FC, McBride JM, Hanson LC. Development and testing of a decision aid on goals of Care for Advanced Dementia. J Am Med Dir Assoc. 2014;15:251–255. doi: 10.1016/j.jamda.2013.11.020.
    1. van der Steen JT, Hertogh CMPM, de Graas T, Nakanishi M, Toscani F, Arcand M. Translation and cross-cultural adaptation of a family booklet on comfort care in dementia: sensitive topics revised before implementation. J Med Ethics. 2013;39:104–109. doi: 10.1136/medethics-2012-100903.
    1. van der Steen JT, Toscani F, de Graas T, Finetti S, Nakanishi M, Nakashima T, et al. Physicians’ and nurses’ perceived usefulness and acceptability of a family information booklet about comfort care in advanced dementia. J Palliat Med. 2011;14:614–622. doi: 10.1089/jpm.2010.0484.

Source: PubMed

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