Support for families of patients dying with dementia: A qualitative analysis of bereaved family members' experiences and suggestions

Palliative and Supportive Care

Volumn 13, Issue 3, 2013, Pages 435-442

  Muders, Pia ^a   Zahrt Omar, Corinna Aruna ^a   Bussmann, Sonja ^a   Haberstroh, Julia ^b   Weber, Martin ^a  

^a UNIVERSITY MEDICAL CENTER MAINZ   (Germany)

^b GOETHE UNIVERSITY   (Germany)

Author keywords

Dementia; End of life; Family caregiving; Palliative care; Qualitative research

Indexed keywords

BEREAVEMENT; CAREGIVER; CROSS-SECTIONAL STUDY; DEMENTIA; HUMAN; INTERPERSONAL COMMUNICATION; PSYCHOLOGY; QUALITATIVE RESEARCH; QUESTIONNAIRE; TERMINAL CARE;

BEREAVEMENT; CAREGIVERS; COMMUNICATION; CROSS-SECTIONAL STUDIES; DEMENTIA; HUMANS; QUALITATIVE RESEARCH; SURVEYS AND QUESTIONNAIRES; TERMINAL CARE;

EID: 84945471704     PISSN: 14789515     EISSN: 14789523     Source Type: Journal    
DOI: 10.1017/S1478951513001107     Document Type: Article

References (30)

1. Adler, G., Kuskowski, M.A. & Mortimer, J. (1995). Respite use in dementia patients. Clinical Gerontologist, 15(3), 17-30.
2. Baumgarten, M., Battista, R.N., Infante-Rivard, C., et al. (1992). The psychological and physical health of family members caring for an elderly person with dementia. Journal of Clinical Epidemiology, 45(1), 61-70.
3. Bickel, H. (2012). Die Epidemiologie der Demenz. Retrieved July 30, 2013 from http://www.deutsche-alzheimer.de/fileadmin/alz/pdf/factsheets/FactSheet01-2012.pdf.
4. Bleidorn, J., Pahlow, H., Klindtworth, K., et al. (2012). Versorgung von Menschen am Lebensende. Erfahrungen und Erwartungen von hinterbliebenen Angehörigen. Deutsche Medizinische Wochenschrift, 137, 1343-1348.
5. Brodaty, H. & Donkin, M. (2009). Family caregivers of people with dementia. Dialogues in Clinical Neuroscience, 11(2), 217-228.
6. Brodaty, H., Green, A. & Koschera, A. (2003). Meta-analysis of psychosocial interventions for caregivers of people with dementia. Journal of the American Geriatrics Society, 51, 657-664.
7. Clyburn, L.D., Stones, M.J., Hadjistavropoulos, T., et al. (2000). Predicting caregiver burden and depression in Alzheimer's disease. The Journals of Gerontology, B: Psychological Sciences and Social Sciences 55B(1), S2-S13.
8. Escobar Pinzon, L.C., Munster, E., Fischbeck, S., et al. (2010). End-of-life care in Germany: Study design, methods and first results of the EPACS (Establishment of Hospice and Palliative Care Services in Germany) study. BMC Palliative Care, 9, 16.
9. Gerhard, C. & Bollig, G. (2007). Palliative Care für Patienten mit fortgeschrittener Demenz. Zeitschrift für Palliativmedizin, 8(2), 69-72.
10. Gräßel, E. (1998). Häusliche Pflege dementiell und nicht dementiell Erkrankter, Teil 2: Gesundheit und Belastung der Pflegenden. Zeitschrift für Gerontologie und Geriatrie, 31, 57-62.
11. Hennings, J., Froggatt, K. & Keady, J. (2010). Approaching the end of life and dying with dementia in care homes: The accounts of family carers. Reviews in Clinical Gerontology, 20(02), 114-127.
12. Hesse-Bieber, S. (2010). Mixed-methods research: Merging theory with practice. New York: Guilford Press.
13. Holley, C.K.&Mast, B.T. (2009). The impact of anticipatory grief on caregiver burden in dementia caregivers. The Gerontologist, 49(3), 388-396.
14. Hughes, J.C., Jolley, D., Jordan, A., et al. (2007). Palliative care in dementia: Issues and evidence. Advances in Psychiatric Treatment, 13(4), 251-260.
15. Klindtworth, K., Cuno, J., Schneider, N., et al. (2010). Quality management on a palliative care unit: What can be gained from qualitative interviews with patients and their relatives? Zeitschrift für Palliativmedizin, 11(4), 180-187.
16. Kunz, R. (2003). Palliative care for patients with advanced dementia: Evidence-based practice replaced by valuesbased practice. Zeitschrift für Gerontologie und Geriatrie, 36(5), 355-359.
17. Lawrence, V., Samsi, K., Murray, J., et al. (2011). Dying well with dementia: Qualitative examination of end-oflife care. The British Journal of Psychiatry, 199(5), 417-422.
18. Mayring, Philipp. (2010). Qualitative inhaltsanalyse: Grundlagen und techniken, 11th ed. Weinheim: Beltz.
19. Papastavrou, E., Kalokerinou, A., Papacostas, S.S., et al. (2007). Caring for a relative with dementia: Family caregiver burden. Journal of Advanced Nursing, 58(5), 446-457.
20. Peacock, S. (2012). The experience of providing end-of-life care to a relative with advanced dementia: An integrative literature review. Palliative & Supportive Care, 11(2), 155-168.
21. Pinquart, M. & Sörensen, S. (2003). Associations of stressors and uplifts of caregiving with caregiver burden and depressive mood-metaanalysis. The Journals of Gerontology, Series B: Psychological Sciences and Social Sciences, 58B(2), P112-P128.
22. Robinson, L., Hughes, J., Daley, S., et al. (2005). End-of-life care and dementia. Reviews in Clinical Gerontology, 15(02), 135.
23. Shanley, C., Russell, C., Middleton, H., et al. (2011). Living through end-stage dementia: The experiences and expressedneeds of family carers. Dementia, 10(3), 325-340.
24. Tappen, R. (2011). Advanced nursing research: From theory to practice. London: Jones & Bartlett Learning International.
25. Thompson, G.N. & Roger, K. (2013). Understanding the needs of family caregivers of older adults dying with dementia. Palliative & Supportive Care, 1-9.
26. Treloar, A., Crugel, M. & Adamis, D. (2009). Palliative and end-of-life care of dementia at home is feasible and rewarding: Results from the "Hope for Home" study. Dementia, 8(3), 335-347.
27. van der Steen, J.T., Radbruch, L., Hertogh, C.M., et al. (2013). White paper defining optimal palliative care in older people with dementia: A Delphi study and recommendations from the European Association for Palliative Care. Palliative Medicine. doi: 10.1177/0269216313493685 [Epub ahead of print].
28. World Health Organization (WHO) (2013). WHO definition of palliative care. Retrieved July 30, 2013 from http://www.who.int/cancer/palliative/definition/en/.
29. Zank, S., Schacke, C. & Leipold, B. (2007). Längsschnittstudie zur Belastung pflegender Angehöriger von demenziell Erkrankten. Zeitschrift für Gerontopsychologie-Psychiatrie, 20(4), 239-255.
30. Zieschang, T., Oster, P., Pfisterer, M., et al. (2012). Palliative care for patients with dementia. Zeitschrift für Gerontologie und Geriatrie, 45(1), 50-54.