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Views of people living with dementia and their families/care partners: helpful and unhelpful responses to behavioral changes

Published online by Cambridge University Press:  04 November 2022

Claire V. Burley Open the ORCID record for Claire V. Burley [Opens in a new window] ,
Anne-Nicole Casey Open the ORCID record for Anne-Nicole Casey [Opens in a new window] ,
Lynn Chenoweth Open the ORCID record for Lynn Chenoweth [Opens in a new window]  and
Henry Brodaty Open the ORCID record for Henry Brodaty [Opens in a new window]
Claire V. Burley
Affiliation:
Centre for Healthy Brain Ageing (CHeBA), UNSW Sydney, NSW, Australia
Anne-Nicole Casey
Affiliation:
Centre for Healthy Brain Ageing (CHeBA), UNSW Sydney, NSW, Australia
Lynn Chenoweth
Affiliation:
Centre for Healthy Brain Ageing (CHeBA), UNSW Sydney, NSW, Australia
Henry Brodaty*
Affiliation:
Centre for Healthy Brain Ageing (CHeBA), UNSW Sydney, NSW, Australia Academic Department for Old Age Psychiatry, Prince of Wales Hospital, South Eastern Sydney Local Health District, NSW, Australia
*
Correspondence should be addressed to: Professor Henry Brodaty, Centre for Healthy Brain Ageing (CHeBA), School of Clinical Medicine, UNSW Medicine & Health, Discipline of Psychiatry and Mental Health, Level 3, AGSM Building, School of Psychiatry, University of New South Wales, Sydney, NSW 2052, Australia. Email: h.brodaty@unsw.edu.au
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Abstract

Objectives:

This study investigated the views of people living with dementia and their families/care partners on (i) what they find helpful or unhelpful regarding behavioral changes, i.e. which coping strategies they used for themselves and/or which responses from others, and (ii) what they consider to be appropriate terminology to describe behavioral changes.

Design & setting:

One-on-one semi-structured interviews were conducted with people living with dementia and families/care partners face to face, online, or over the telephone.

Measurements:

Data from open-ended questions were analyzed inductively. Common themes were derived from the data using an iterative approach.

Results:

Twenty-one people living with dementia and 20 family members/care partners were interviewed. Four main themes were derived for helpful responses, and three main themes for unhelpful responses. Helpful responses included providing clear professional support pathways and supportive environments where people living with dementia can engage in physical, cognitive, social, and spiritual activities. Unhelpful responses included discriminatory treatment from others and use of medicalized terminology. Views toward terminology varied; people with lived experience most favored using “changed behaviors” over other terminology. Areas for improvement included targeting dementia stigma, societal education on dementia, and building confidence in people living with dementia by focusing on living well with dementia.

Conclusion:

Knowledge of the views of people living with dementia may assist healthcare professionals to provide more appropriate care for people living with dementia.

Keywords

Biopsychosocialbehavioral changesDementiaNeuropsychiatric symptomsPharmacologicalNonpharmacological
Type
Original Research Article
Information
International Psychogeriatrics , Volume 35 , Special Issue 2: Issue Theme: Families’ Emotional Involvement in Caregiving , February 2023 , pp. 77 - 93
Copyright
© International Psychogeriatric Association 2022

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References

Adekoya, A. A. and Guse, L. (2019). Wandering behavior from the perspectives of older adults with mild to moderate dementia in long-term care. Research in Gerontological Nursing, 12, 239–247.CrossRefGoogle ScholarPubMed
Algase, D. L., Beck, C. and Kolanowski, A. et al. (1996) Need-Driven dementia-compromised behavior: an alternative view of disruptive behavior. American Journal of Alzheimer’s Disease. 11(6), 10–19. doi: 10.1177/153331759601100603 CrossRefGoogle Scholar
Alzheimer’s Society Canada (2017). Person-centred language guidelines. https://alzheimer.ca/sites/default/files/documents/Person-centred-language-guidelines_Alzheimer-Society.pdf, 7 July 2022.Google Scholar
Alzheimer’s Society UK (2018). Positive language: an Alzheimer’s Society guide to talking about dementia. https://www.alzheimers.org.uk/sites/default/files/2018-09/Positive%20language%20guide_0.pdf, 7 July 2022.Google Scholar
Bacsu, J. et al. (2022). Stigma reduction interventions of dementia: a scoping review. Canadian Journal on Aging/La Revue Canadienne Du Vieillissement, 41, 203–213.CrossRefGoogle ScholarPubMed
Ballard, C. et al. (2017). Impact of antipsychotic review and non-pharmacological intervention on health-related quality of life in people with dementia living in care homes: WHELD—a factorial cluster randomised controlled trial. International Journal of Geriatric Psychiatry, 32, 1094–1103.CrossRefGoogle ScholarPubMed
Beeri, M. S., Werner, P., Davidson, M. and Noy, S. (2002). The cost of behavioral and psychological symptoms of dementia (BPSD) in community dwelling Alzheimer’s disease patients. International Journal of Geriatric Psychiatry, 17, 403–408.CrossRefGoogle ScholarPubMed
Birt, L. et al. (2020). Maintaining social connections in dementia: a qualitative synthesis. Qualitative Health Research, 30, 23–42.CrossRefGoogle ScholarPubMed
Boyatzis, R. E. (1998). Transforming qualitative information: Thematic analysis and code development. Thousand Oaks, CA: Sage Publications Inc.Google Scholar
Braun, A. et al. (2019). Managing behavioral and psychological symptoms in community dwelling older people with dementia. A systematic review of qualitative studies. Dementia, 18, 2950–2970.CrossRefGoogle ScholarPubMed
Brimelow, R., Wollin, J., Byrne, G. and Dissanayaka, N. (2019). Prescribing of psychotropic drugs and indicators for use in residential aged care and residents with dementia. International Psychogeriatrics, 31, 837–847.CrossRefGoogle Scholar
Brodaty, H. et al. (2018). Antipsychotic deprescription for older adults in long-term care: the HALT study. Journal of the American Medical Directors Association, 19, 592–600, e7.CrossRefGoogle ScholarPubMed
Brorsson, A., Öhman, A., Lundberg, S. and Nygård, L. (2011). Accessibility in public space as perceived by people with Alzheimer’s disease. Dementia, 10, 587–602.CrossRefGoogle Scholar
Burley, C. V., Casey, A., Chenoweth, L. and Brodaty, H. (2021). Reconceptualising behavioral and psychological symptoms of dementia: views of people living with dementia and families/care partners. Frontiers in Psychiatry, 12, 710703. DOI 10.3389/fpsyt.2021.710703.CrossRefGoogle ScholarPubMed
Burley, C. V., Livingston, G., Knapp, M. R., Wimo, A., Norman, R. and Brodaty, H. (2020). Time to invest in prevention and better care of behaviors and psychological symptoms associated with dementia. International Psychogeriatrics, 32, 567–572.CrossRefGoogle Scholar
Burns, K., Jayasinha, R., Tsang, R. and Brodaty, H. (2012). Behavior management-a guide to good practice: Managing behavioral and psychological symptoms of dementia. Sydney: Dementia Centre for Research Collaboration.Google Scholar
Cations, M. et al. (2020). Health professional perspectives on rehabilitation for people with dementia. The Gerontologist, 60, 503–512.CrossRefGoogle ScholarPubMed
Chenoweth, L. et al. (2014). PerCEN: a cluster randomized controlled trial of person-centered residential care and environment for people with dementia. International Psychogeriatrics, 26, 1147–1160. DOI 10.1017/S1041610214000398.CrossRefGoogle ScholarPubMed
Chenoweth, L., Cook, J. and Williams, A. (2021a). Perceptions of care quality during an acute hospital stay for persons with dementia and families/carers. Healthcare, 9, 1176–1186. DOI 10.3390/healthcare9091176.CrossRefGoogle Scholar
Chenoweth, L., Williams, A., Fry, M., Endean, E. and Liu, Z. (2021b). Outcomes of person-centered care for persons with dementia in the acute care setting: a pilot study. Clinical Gerontologist, 45, 1–15. DOI 10.1080/07317115.2021.1946233.Google ScholarPubMed
Cohen-Mansfield, J., Dakheel-Ali, M., Marx, M. S., Thein, K. and Regier, N. G. (2015). Which unmet needs contribute to behavior problems in persons with advanced dementia? Psychiatry Research, 228, 59–64.CrossRefGoogle ScholarPubMed
Commonwealth of Australia (2021), Royal commission into aged care quality and safety. Final report: Care, dignity and respect, Volume 1 Summary and recommendations, (accessed 27 August 2021). https://agedcare.royalcommission.gov.au/publications/final-report-volume-1.Google Scholar
Cunningham, C., Macfarlane, S. and Brodaty, H. (2019). Language paradigms when behavior changes with dementia: # BanBPSD. International Journal of Geriatric Psychiatry, 34, 1109–1113. DOI 10.1002/gps.5122.CrossRefGoogle ScholarPubMed
DEEP (The Dementia Engagement and Empowerment Project) (2014, Dementia words matter: Guidelines on language about dementia. Available at: https://dementiavoices.org.uk/wp-content/uploads/2015/03/DEEP-Guide-Language.pdf, 7 July 2022.Google Scholar
Dementia Australia (2021). Dementia language guidelines. https://www.dementia.org.au/resources/dementia-language-guidelines, 20 January 2022,Google Scholar
Dementia Training Australia (2022). Responsive behaviors quick reference cards. https://dta.com.au/resources/responsive-behaviors-quick-reference-cards/, 20 January 2021.Google Scholar
Dyer, S. M., Harrison, S. L., Laver, K., Whitehead, C. and Crotty, M. (2018). An overview of systematic reviews of pharmacological and non-pharmacological interventions for the treatment of behavioral and psychological symptoms of dementia. International Psychogeriatrics, 30, 295–309. DOI 10.1017/S1041610217002344.CrossRefGoogle ScholarPubMed
Finkel, S. I., Silva, J. C., Cohen, G. D., Miller, S. and Sartorius, N. (1998). Behavioral and psychological symptoms of dementia: a consensus statement on current knowledge and implications for research and treatment. The American Journal of Geriatric Psychiatry, 6, 97–100.Google Scholar
Folstein, M. F., Folstein, S. E. and McHugh, P. R. (1975). “Mini-mental state”: a practical method for grading the cognitive state of patients for the clinician. Journal of Psychiatric Research, 12, 189–198. DOI 10.1016/0022-3956(75)90026-6.CrossRefGoogle ScholarPubMed
Gibbs, G. R. (2018). Analyzing qualitative data. 2nd edition, Thousand Oaks, CA: Sage Publications Ltd, https://dx.doi.org/10.4135/9781526441867.CrossRefGoogle Scholar
Gilmore-Bykovskyi, A., Mullen, S., Block, L., Jacobs, A. and Werner, N. E. (2020). Nomenclature used by family caregivers to describe and characterize neuropsychiatric symptoms. The Gerontologist, 60, 896–904.CrossRefGoogle ScholarPubMed
Górska, S., Forsyth, K. and Maciver, D. (2018). Living with dementia: a meta-synthesis of qualitative research on the lived experience. The Gerontologist, 58, e180–e196.Google ScholarPubMed
Hall, G. R. (1987). Progressively lowered stress threshold: a conceptual model for care of adults with alzheimer’s disease. Archives of Psychiatric Nursing, 1, 399–406.Google ScholarPubMed
Hammar, L. M., Alam, M., Olsen, M., Swall, A. and Boström, A. (2021). Being treated with respect and dignity?—Perceptions of home care service among persons with dementia. Journal of the American Medical Directors Association, 22, 656–662.CrossRefGoogle ScholarPubMed
Hung, L. et al. (2021). Creating dementia-friendly communities for social inclusion: a scoping review. Gerontology and Geriatric Medicine, 7, 23337214211013596.CrossRefGoogle ScholarPubMed
International Psychogeriatric Association (2010). The IPA complete guides to behavioral and psychological symptoms of dementia, Milwaukee, WI, International Psychogeriatric Association, www.ipa-online.org/publications/guides-to-bpsd, 7 July 2022.Google Scholar
James, I. A., Gray, K., Moniz-Cook, E., Lee, K., Reichelt, K. and Richardson, J. (2022). Behavioral and psychological symptoms of dementia: a new framework for holistic understanding and non-pharmacological management. BJPsych Advances, 28, 11–20. DOI 10.1192/bja.2021.12.CrossRefGoogle Scholar
Jeon, Y. et al. (2021). Early implementation and evaluation of StepUp for Dementia Research: an Australia-wide dementia research participation and public engagement platform. International Journal of Environmental Research and Public Health, 18, 11353.CrossRefGoogle ScholarPubMed
Kitwood, T. (1993). Towards a theory of dementia care: the interpersonal process. Ageing & Society, 13, 51–67.CrossRefGoogle Scholar
Kitwood, T. M. (1997). Dementia reconsidered: The person comes first. Buckingham, England: Open University Press.Google Scholar
Larsson, V., Holmbom-Larsen, A., Torisson, G., Strandberg, E. L. and Londos, E. (2019). Living with dementia with lewy bodies: an interpretative phenomenological analysis. BMJ Open, 9, e024983–2018-024983.CrossRefGoogle ScholarPubMed
Laver, K. et al. (2016). Clinical practice guidelines for dementia in Australia. Medical Journal of Australia, 204, 191–193. DOI 10.5694/mja15.01339.CrossRefGoogle ScholarPubMed
Livingston, G. et al. (2014). A systematic review of the clinical effectiveness and cost-effectiveness of sensory, psychological and behavioral interventions for managing agitation in older adults with dementia. Health Technology Assessment, 18, 1–226, v-vi.CrossRefGoogle ScholarPubMed
Livingston, G. et al. (2017). Dementia prevention, intervention, and care. The Lancet, 390, 2673–2734.CrossRefGoogle ScholarPubMed
Livingston, G. et al. (2020). Dementia prevention, intervention, and care: 2020 report of the Lancet Commission. The Lancet, 396, 413–446.CrossRefGoogle ScholarPubMed
Low, L., Swaffer, K., McGrath, M. and Brodaty, H. (2018). Do people with early-stage dementia experience prescribed disengagement®? A systematic review of qualitative studies. International Psychogeriatrics, 30, 807–831.CrossRefGoogle ScholarPubMed
Macleod, A., Tatangelo, G., McCabe, M. and You, E. (2017). “There isn’t an easy way of finding the help that’s available.” Barriers and facilitators of service use among dementia family caregivers: a qualitative study. International Psychogeriatrics, 29, 765–776.CrossRefGoogle ScholarPubMed
Markwell, H. (2016). Loaded meanings: the narrative of behavior. Australian Journal of Dementia Care, 5, 12–16.Google Scholar
Miles, M. B. and Huberman, A. M. (1994). Qualitative data analysis: An expanded sourcebook. 2nd edition, Thousand Oaks, CA: Sage Publications Inc.Google Scholar
Morgan, D. L. (1993). Qualitative content analysis: a guide to paths not taken. Qualitative Health Research, 3, 112–121.CrossRefGoogle Scholar
National Health and Medical Research Council (NHMRC) Guideline Adaptation Committee (2016). Clinical practice guidelines and principles of care for people with dementia. Sydney: NHMRC Partnership Centre for Dealing with Cognitive and Related Functional Decline in Older People, (accessed 7 July 2022), https://www.clinicalguidelines.gov.au/print/10161.Google Scholar
O’Brien, B. C., Harris, I. B., Beckman, T. J., Reed, D. A. and Cook, D. A. (2014). Standards for reporting qualitative research: a synthesis of recommendations. Academic Medicine: Journal of the Association of American Medical Colleges, 89, 1245–1251.CrossRefGoogle ScholarPubMed
Robins, L. M. et al. (2021). Definition and measurement of physical and chemical restraint in long-term care: a systematic review. International Journal of Environmental Research and Public Health, 18, 3639.CrossRefGoogle ScholarPubMed
The Royal Australian College of General Practitioners (2019, 2020). RACGP aged care clinical guide (Silver Book), 5th edition, East Melbourne, Vic: RACGP.Google Scholar
van Wijngaarden, E., Alma, M. and The, A. (2019). ‘The eyes of others’ are what really matters: the experience of living with dementia from an insider perspective. PloS One, 14, e0214724.CrossRefGoogle ScholarPubMed
Werner, P., Ulitsa, N., Shephet, D., Abojabel, H., Alpinar-Sencan, Z. and Schicktanz, S. (2021). Fear about Alzheimer’s disease among Israeli and German laypersons, persons with Mild Neurocognitive Disorder and their relatives: a qualitative study. International Psychogeriatrics, 33, 1019–1034.CrossRefGoogle ScholarPubMed
Whittemore, R., Chase, S. K. and Mandle, C. L. (2001). Validity in qualitative research. Qualitative Health Research, 11, 522–537.CrossRefGoogle ScholarPubMed
Wolverson, E., Birtles, H., Moniz-Cook, E., James, I., Brooker, D. and Duffy, F. (2019). Naming and framing the behavioral and psychological symptoms of dementia (BPSD) paradigm: professional stakeholder perspectives. OBM Geriatrics, 3, 1–19.CrossRefGoogle Scholar
Wolverson, E., Dunn, R., Moniz-Cook, E., Gove, D. and Diaz-Ponce, A. (2021). The language of behavior changes in dementia: a mixed methods survey exploring the perspectives of people with dementia. Journal of Advanced Nursing, 77, 1992–2001. DOI 10.1111/jan.14787.CrossRefGoogle ScholarPubMed