Expectations and Concerns of Older Adults With Cognitive Impairment About Their Relationship With Medical Providers: A Call for Therapeutic Alliances

Portacolone, Elena; Covinsky, Kenneth E.; Johnson, Julene K.; Halpern, Jodi

doi:10.1177/1049732320925796

Cited by 11 publications

(14 citation statements)

References 59 publications

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“…Consistent with previous research (Koehn et al, 2016; Portacolone et al, 2020), we further found that participants who felt a lack of rapport or empathy from their health care providers were likely to resist offers of care such as medication or follow-up appointments:[The doctor] said “I can be your neurologist,” and I thought [my wife’s] not gonna come back to see you . .…”

Section: Resultssupporting

confidence: 86%

“…The interpersonal dimensions of health interactions. Consistent with previous research (Koehn et al, 2016;Portacolone et al, 2020), we further found that participants who felt a lack of rapport or empathy from their health care providers were likely to resist offers of care such as medication or follow-up appointments: When I would ask questions, he would always say things like, "Ask your family doctor." He didn't want to answer anything.…”

Section: Offers and Resistancesupporting

confidence: 85%

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Age, Dementia, and Diagnostic Candidacy: Examining the Diagnosis of Young Onset Dementia Using the Candidacy Framework

Novek

Menec

2020

Qual Health Res

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People living with young onset dementia face significant barriers to diagnosis, resulting in delays, misdiagnoses, and treatment gaps. We examined the process of accessing and delivering a diagnosis of young onset dementia using the candidacy framework as a conceptual lens. Semi-structured interviews were conducted with six people living with dementia, 14 family members, and 16 providers in a western Canadian city. Participants’ accounts revealed the diagnosis of young onset dementia as a negotiated process involving patients, family members, and health professionals. Assumptions about age and dementia affected how participants interpreted their symptoms, how they presented to services, and how they, in turn, were perceived by providers. At the organizational level, age-restrictions, fragmentation, and unclear referral pathways further complicated the diagnostic process. Our findings lend support to the growing call for specialist young onset dementia care and point toward several recommendations to develop more age-inclusive diagnostic services.

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Section: Resultssupporting

confidence: 86%

Section: Offers and Resistancesupporting

confidence: 85%

Age, Dementia, and Diagnostic Candidacy: Examining the Diagnosis of Young Onset Dementia Using the Candidacy Framework

Novek

Menec

2020

Qual Health Res

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“…Although we found a high prevalence of any I/ADL difficulty among the entire analytic sample of older adults living alone with probable dementia/CIND, the true percentages could be higher. Qualitative studies [28][29][30] have found that respondents sometimes understate needs to avoid unwanted relocations. Further, cognitive impairment might reduce respondents' ability to assess their own capacity to perform specific I/ADLs.…”

Section: Difficulty and Help Received With Specific I/adlsmentioning

confidence: 99%

Difficulty and help with activities of daily living among older adults living alone with cognitive impairment

Edwards

Brenowitz

Portacolone

et al. 2020

Alzheimer's & Dementia

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Introduction There is limited research on difficulties with activities of daily living (I/ADLs) among older adults living alone with cognitive impairment, including differences by race/ethnicity. Methods For U.S. Health and Retirement Study (2000–2014) participants aged 55+ living alone with cognitive impairment (4,666 individuals; 9,091 observations), we evaluated I/ADL difficulty and help. Results Among 4.3 million adults aged 55+ living alone with cognitive impairment, an estimated 46% reported an I/ADL difficulty; 72% reported not receiving help with an I/ADL. Women reported more difficulty than men. Compared to white women, black women were 22% more likely to report a difficulty without help, and Latina women were 36% more likely to report a difficulty with help. Among men, racial/ethnic differences in outcomes were not significant. Patterns of difficulty without help by race/ethnicity were similar among Medicaid beneficiaries. Discussion Findings call for targeted efforts to support older adults living alone with cognitive impairment.

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“…Three studies (Karnieli-Miller et al, 2007; Karnieli-Miller, Werner, Neufeld-Kroszynski et al, 2012; Portacolone et al, 2020) used an observational approach to understand more about the interaction of clinicians with the person and carer during disclosure. In a study from Israel, three neurologists with considerable experience of dementia disclosure, felt they made an honest and appropriate disclosure.…”

Section: Resultsmentioning

confidence: 99%

Truth, hope and the disclosure of a dementia diagnosis: A scoping review of the ethical considerations from the perspective of the person, carer and clinician

et al. 2022

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This paper explores contemporary approaches to balancing truth with the provision of hope during the disclosure of a dementia diagnosis. We discuss the ethical significance of these practices as they relate to each member of the triad – the person, the carer and the clinician – at the point of diagnosis and beyond. The process of disclosing a diagnosis of dementia is complex. It encompasses breaking bad news while balancing hope, with truth about a progressive life-limiting condition. The process of receiving the diagnosis likewise challenges the person who may be unprepared for the diagnosis, while carers seek information and supports. The impact of receiving a diagnosis of dementia can be life-changing and harmful at the personal level – for both the person and carer. This risk of harm becomes a critical consideration for clinicians when deciding on the level of truth: what information should be relayed and to whom? That risk is also balanced against the ethical issue of patient autonomy, which includes the right to know (or not) and make informed decisions about therapeutic interventions. While the consensus is that the autonomy of the person living with dementia must be upheld, controversy exists regarding the extent to which this should occur. For instance, at diagnosis, it is common for clinicians to use euphemisms rather than the word dementia to maintain hope, even though people and carers prefer to know the diagnosis. This practice of therapeutic lying is a pervasive ethical issue in dementia care, made more acceptable by its roots in diagnosis disclosure.

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Expectations and Concerns of Older Adults With Cognitive Impairment About Their Relationship With Medical Providers: A Call for Therapeutic Alliances

Cited by 11 publications

References 59 publications

Age, Dementia, and Diagnostic Candidacy: Examining the Diagnosis of Young Onset Dementia Using the Candidacy Framework

Age, Dementia, and Diagnostic Candidacy: Examining the Diagnosis of Young Onset Dementia Using the Candidacy Framework

Difficulty and help with activities of daily living among older adults living alone with cognitive impairment

Truth, hope and the disclosure of a dementia diagnosis: A scoping review of the ethical considerations from the perspective of the person, carer and clinician

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