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

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.

Prototype development of the Mental Health benchmarking Industry Tool for residential aged Care (MHICare Tool): a protocol paper of a two-stage sequential and mixed methods codesign study

“…The identification and ongoing treatment of these conditions is contextually different from those experienced by people within the community setting 3 4. Access to adequate psychiatric consultation and educational services for changed behaviours and psychological symptoms are significantly limited within RACFs and access to quality mental health services is a prominent concern among aged care administrators, clinicians, advocates and policymakers,3 as well as residents and their families/care partners 5. Access to private psychological services such as psychologists through government-funded agencies is restricted within Australia6 and professional care staff exhibit ambivalent attitudes surrounding psychotherapy for older adults 7.…”

“…The new Aged Care Quality Standards in Australia were introduced in 2019 with greater focus on resident outcomes and minimising the use of physical and chemical restraints, which are thought to be used with up to 40% of RACF residents in Australia 12 13. Accumulating evidence indicates that non-pharmacological approaches can improve changed behaviours, psychological symptoms and other resident mental health outcomes,13–15 are cost-effective14 and are preferred approaches for people living with dementia 5. Factors that positively influence the mental health of residents, both with and without dementia, include organisational policy and procedures, the care environment, staff attitudes, skills, knowledge and resources, as well as the enactment of commonly cited clinical care and psychosocial interventions that focus on person-centred care 14 15.…”

“… 3 4 Access to adequate psychiatric consultation and educational services for changed behaviours and psychological symptoms are significantly limited within RACFs and access to quality mental health services is a prominent concern among aged care administrators, clinicians, advocates and policymakers, 3 as well as residents and their families/care partners. 5 Access to private psychological services such as psychologists through government-funded agencies is restricted within Australia 6 and professional care staff exhibit ambivalent attitudes surrounding psychotherapy for older adults. 7 Services within RACFs are typically provided by professionals who are not specifically trained and employed in mental healthcare, with nurses and care staff receiving very little or no geropsychology training.…”

“…12 13 Accumulating evidence indicates that non-pharmacological approaches can improve changed behaviours, psychological symptoms and other resident mental health outcomes, 13–15 are cost-effective 14 and are preferred approaches for people living with dementia. 5 Factors that positively influence the mental health of residents, both with and without dementia, include organisational policy and procedures, the care environment, staff attitudes, skills, knowledge and resources, as well as the enactment of commonly cited clinical care and psychosocial interventions that focus on person-centred care. 14 15 However, significant difficulties have been observed in sustaining implementation and change in practice beyond the intervention period.…”

Like beauty and contact lenses, the meaning of dementia behavioral changes is in the eyes of the beholder

“…Recently, dementia person-centered care has been expanded into a "relationship-centered" approach that includes the views and preferences of the person with dementia and the caregiver, their relationship, and communication patterns (Mohr et al, 2021). The work by Burley et al (2022) is one of the few studies that adopt this much-needed approach.…”