Needs of people with advanced dementia in their final phase of life: A multi-perspective qualitative study in nursing homes

Abstract

Background:

People with advanced dementia present an important target group for palliative care. They suffer a range of symptoms, and their verbal communication abilities are highly restricted. At present, little is known about their needs in the final phase of life.

Aim:

To identify the needs of people with advanced dementia in their final phase of life and to explore the aspects relevant to first recognize and then meet these needs.

Design:

Multi-perspective qualitative study using grounded theory methodology conducting group discussions, individual interviews, and participant observation.

Setting/participants:

The study encompassed nursing homes and involved health professionals, relatives, and residents with advanced dementia.

Results:

Data were collected in six nursing homes. Nine group discussions and three individual interviews were conducted comprising 42 health professionals and 14 relatives. Participant observations aided in giving the perspective of 30 residents with advanced dementia. Data analysis generated a total of 25 physical, psychosocial, and spiritual needs divided into 10 categories. Physical needs were classified as follows: “food intake,” “physical well-being,” and “physical activity and recovery.” Categories of psychosocial needs were classified as follows: “adaptation of stimuli,” “communication,” “personal attention,” “participation,” “familiarity and safety,” as well as “self-determination.” Spiritual needs addressed “religion.” The results revealed a multitude of key aspects for recognizing and meeting these needs, stressing the importance of personhood.

Conclusion:

People with advanced dementia in their final phase of life have a multitude of individual and complex needs. This evidence contributes to narrowing the current research gap, offering an orientation framework for research and practice.

Keywords

Dementia health services needs and demand terminal care palliative care personhood nursing homes qualitative research grounded theory

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References

World Health Organization. Dementia: a public health priority. UK: World Health Organization, 2012.

Mitchell

Teno

Kiely

et al . The clinical course of advanced dementia. New Engl J Med 2009; 361: 1529–1538.

Vandervoort

van den Block

van der Steen

et al . Nursing home residents dying with dementia in Flanders, Belgium: a nationwide postmortem study on clinical characteristics and quality of dying. J Am Med Dir Assoc 2013; 14: 485–492.

van den Block

. Palliative care for older people: a public health perspective. Oxford: Oxford University Press, 2015.

van der Steen

Radbruch

Hertogh

et al . White paper defining optimal palliative care in older people with dementia: a Delphi study and recommendations from the European Association for Palliative Care. Palliative Med 2014; 28: 197–209.

Nakanishi

Nakashima

Shindo

et al . An evaluation of palliative care contents in national dementia strategies in reference to the European Association for Palliative Care white paper. Int Psychogeriatr 2015; 27: 1551–1561.

Murphy

Froggatt

Connolly

et al . Palliative care interventions in advanced dementia. Cochrane Database Syst Rev 2016.

Hughes

Hedley

Harris

. The practice and philosophy of palliative care in dementia. In: Hughes

(ed.) Palliative care in severe dementia in association with nursing and residential care. London: Quay Books, 2006, pp. 1–11.

Kitwood

Dementia reconsidered: the person comes first. Buckingham; Bristol: Open University Press, 1997.

10.

Harrison Dening

. Palliative and end of life care for people with dementia. Nurs Stand 2016; 30: 42–49.

11.

Byrne

Benoit

Lopez Arrieta

et al . For whom and for what the definition of severe dementia is useful: an EDCON consensus. J Nutr Health Aging 2008; 12: 714–719.

12.

McCarthy

Addington-Hall

Altmann

The experience of dying with dementia: a retrospective study. Int J Geriatr Psych 1997; 12: 404–409.

13.

Mitchell

Miller

Teno

et al . The advanced dementia prognostic tool: a risk score to estimate survival in nursing home residents with advanced dementia. J Pain Symptom Manage 2010; 40: 639–651.

14.

Mitchell

Kiely

Hamel

MB.

Dying with advanced dementia in the nursing home. Arch Intern Med 2004; 164: 321–326.

15.

Di Giulio

Toscani

Vilani

et al . Dying with advanced dementia in long-term care geriatric institutions: a retrospective study. J Palliat Med 2008; 11: 1023–1028.

16.

Sampson

EL.

Palliative care for people with dementia. Brit Med Bull 2010; 96: 159–174.

17.

Chang

Hancock

Harrison

et al . Palliative care for end-stage dementia: a discussion of the implications for education of health care professionals. Nurs Educ Today 2005; 25: 326–332.

18.

Johnson

Chang

Daly

et al . The communication challenges faced in adopting a palliative care approach in advanced dementia. Int J Nurs Pract 2009; 15: 467–474.

19.

Koopmans

Pasman

van der Steen

JT.

Palliative care in patients with severe dementia. In: Burns

Winblad

(eds) Severe dementia. Chichester: John Wiley & Sons, 2006, pp. 205–213.

20.

Davies

Maio

Vedavanam

et al . Barriers to the provision of high-quality palliative care for people with dementia in England: a qualitative study of professionals’ experiences. Health Soc Care Comm 2014; 22: 386–394.

21.

Perrar

Schmidt

Eisenmann

et al . Needs of people with severe dementia at the end-of-life: a systematic review. J Alzheimers Dis 2015; 43: 397–413.

22.

Corbin

Strauss

Basics of qualitative research: techniques and procedures for developing grounded theory. Los Angeles, CA: SAGE Publications, 2015.

23.

Alzheimer Europe. The ethics of dementia research. Luxembourg: Alzheimer Europe, 2011.

24.

Hubbard

Downs

Tester

Including older people with dementia in research: challenges and strategies. Aging Ment Health 2003; 7: 351–362.

25.

Reisberg

Ferris

de Leon

et al . Global Deterioration Scale (GDS). Psychopharmacol Bull 1988; 24: 661–663.

26.

Kawulich

BB.

Participant observation as a data collection method. Qual Soc Res 2005; 6: 43.

27.

VERBI Software Consult Sozialforschung GmbH. MAXQDA: Software für qualitative Datenanalyse. Berlin: VERBI Software Consult Sozialforschung GmbH, 1989–2017.

28.

Chung

JCC

. Care needs assessment of older Chinese individuals with dementia of Hong Kong. Aging Ment Health 2006; 10: 631–637.

29.

Miu

DKY

Chan

. Under-detection of pain in elderly nursing home residents with moderate to severe dementia. J Clin Gerontol Geriatr 2014; 5: 23–27.

30.

Cadieux

Garcia

Patrick

Needs of people with dementia in long-term care: a systematic review. Am J Alzheimers Dis Other Demen 2013; 28: 723–733.

31.

von Kutzleben

Schmid

Halek

et al . Community-dwelling persons with dementia: what do they need? What do they demand? What do they do? A systematic review on the subjective experiences of persons with dementia. Aging Ment Health 2012; 16: 378–390.

32.

Hancock

Woods

Challis

et al . The needs of older people with dementia in residential care. Int J Geriatr Psych 2006; 21: 43–49.

33.

van der Roest

Meiland

Maroccini

et al . Subjective needs of people with dementia: a review of the literature. Int Psychogeriatr 2007; 19: 559–592.

34.

https://de.statista.com/statistik/daten/studie/37028/umfrage/mitglieder-in-religionsgemeinschaften-in-deutschland/ (accessed 27 October 2017).

35.

van der Roest

Meiland

Comijs

et al . What do community-dwelling people with dementia need? A survey of those who are known to care and welfare services. Int psychogeriatr 2009; 21: 949–965.

36.

Gove

Sparr

Dos Santos Bernardo

et al . Recommendations on end-of-life care for people with dementia. J Nutr Health Aging 2010; 14: 136–139.

37.

Brown Wilson

Swarbrick

Pilling

et al . The senses in practice: enhancing the quality of care for residents with dementia in care homes. J Adv Nurs 2013; 69: 77–90.

38.

Vasse

Vernooij-Dassen

Spijker

et al . A systematic review of communication strategies for people with dementia in residential and nursing homes. Int Psychogeriatr 2010; 22: 189–200.

39.

Algase

Beck

Kolanowski

et al . Need-driven dementia-compromised behavior: an alternative view of disruptive behavior. Am J Alzheimers Dis 1996; 11: 10–19.

40.

Schäufele

Kohler

Hendlmeier

et al . Prevalence of dementia and medical care in German nursing homes: a nationally representative survey. Psychiatr Prax 2013; 40: 200–206.

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