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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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