The Precarity of Older Adults Living Alone With Cognitive Impairment

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

doi:10.1093/geront/gnx193

Cited by 55 publications

(68 citation statements)

References 37 publications

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“…Multiple interviews with participants provided insights on participants’ experiences of grappling, often on their own, with the management of their health and with major decisions about where and how to live, despite having a diagnosis of MCI or AD in their medical records. On one side this finding corroborate the idea that people living with cognitive impairment are likely to sense precarity [9, 56], defined as “life worlds characterized by uncertainty and insecurity” [57]. On the other side, this fourth theme sets older adults living alone with cognitive impairment apart from their counterparts living with others who usually had a caregiver supporting them with major decisions.…”

Section: Discussionsupporting

confidence: 66%

“…They also expressed their frustration about their inability to further support their patients because of lack of appropriate and affordable services in the community as well as a lack of support from family members. Evidence of difficult relationship between older adults living alone with cognitive impairment and their providers also emerged in recent studies of our group ([9] and Portacolone et al, unpublished results). In particular, some older adults mentioned that they did not feel properly supported by their healthcare providers.…”

Section: Introductionsupporting

confidence: 71%

“…The study of the effects of the diagnosis was part of a larger investigation on the overall lived experience of older adults living alone with cognitive impairment [9]. Therefore, the interview protocol also included questions on the overall lived experience of study participants.…”

Section: Methodsmentioning

confidence: 99%

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The Effects and Meanings of Receiving a Diagnosis of Mild Cognitive Impairment or Alzheimer’s Disease When One Lives Alone

Portacolone

Johnson

Covinsky

et al. 2018

JAD

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Background One third of older adults with cognitive impairment live alone and are at high risk for poor health outcomes. Little is known about how older adults who live alone experience the process of receiving a diagnosis of mild cognitive impairment (MCI) or Alzheimer’s disease (AD). Objective The aim of this study was to understand the effects and meanings of receiving a diagnosis of MCI or AD on the lived experience of older adults living alone. Methods This is a qualitative study of adults age 65 and over living alone with cognitive impairment. Participants’ lived experiences were elicited through ethnographic interviews and participant observation in their homes. Using a qualitative content analysis approach, interview transcripts and fieldnotes were analyzed to identify codes and themes. Results Twenty-nine older adults and 6 members of their social circles completed 114 ethnographic interviews. Core themes included: relief, distress, ambiguous recollections, and not knowing what to do. Participants sometimes felt uplifted and relieved by the diagnostic process. Some participants did not mention having received a diagnosis or had only partial recollections about it. Participants reported that, as time passed, they did not know what to do with regard to the treatment of their condition. Sometimes they also did not know how to prepare for a likely worsening of their condition, which they would experience while living alone. Conclusion Findings suggest the need for more tailored care and follow-up as soon as MCI or AD is diagnosed in persons living alone.

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Section: Discussionsupporting

confidence: 66%

Section: Introductionsupporting

confidence: 71%

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The Effects and Meanings of Receiving a Diagnosis of Mild Cognitive Impairment or Alzheimer’s Disease When One Lives Alone

Portacolone

Johnson

Covinsky

et al. 2018

JAD

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“…These results imply that minority women had a higher prevalence of I/ADL difficulty than comparable white women, but the nature of the inequality differed. Black women had more disability than white women and-to the extent that difficulty without help reflects precarity [24][25][26][27][28] as well as some degree of unmet need for assistance with I/ADLs-black women were also more likely to be in this state of heightened precarity and possibly living with unmet needs for care. For Latinas, the results suggested elevated rates of disability relative to whites.…”

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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“…Portacolone, Rubinstein, Covinsky, Halpern, and Johnson () show in a qualitative study of 12 older people living alone with a diagnosis of cognitive impairment that they experienced the following: (a) distress caused by the uncertainty of having cognitive impairment that has an unpredictable course, (b) responsibility for handling their cognitive impairment and (c) pressures because of a lack of appropriate services to support independent living for older persons with cognitive impairment. Several studies describe the frailty that older people experience including the decline in health and well‐being, physical, psychological and social functioning (Becker, ; Puts et al, ; Warmoth et al, ).…”

Section: Introductionmentioning

confidence: 99%

Strengths and support of older people affected by precarity in South Louisiana

Hedman

2019

Int J Older People Nursing

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Background Few empirical studies have examined strengths and support of older people in circumstances of precarity. A better understanding of this problem has the potential to contribute to the development of care planning and delivery. Purpose To investigate how older people deal with episodes of precarity in South Louisiana. Method More than 300 hr of participant observation and interviews were conducted with 20 predominantly older African American women in a housing complex for low‐income older persons and two senior citizen centres. Results The findings demonstrate five central negative conditions of precarity that older people had to manage: (a) loss and discontinuity of home‐based healthcare services, (b) stress after loss or disruption of social support, (c) problems of poverty, (d) cognitive impairment and declining health and (e) stress of eviction. Strengths and support that older people used were as follows: (a) spiritual faith, (b) psychological strengths, (c) spiritual relationships, (d) family support, (e) friendships of love and friendships of helpfulness, (f) care and support performed by home‐based services, (g) senior centre and housing complex activities, (h) church memberships and activities, and (i) grocery store and café contacts. Conclusion Home‐based services were not sufficient to prevent and reduce precarity for older people because of a lack of and discontinuities in these services. Implications for practice This study adds to the literature about precarity among community‐based older people by demonstrating gaps in care support and medication access. The findings suggest that ongoing state funding and support by home‐based services are necessary to support frail older people in precarious living conditions to survive and handle stressful life events by reducing vulnerability and enhancing strengths and supportive resources of older people.

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The Precarity of Older Adults Living Alone With Cognitive Impairment

Abstract: These 3 themes all pointed to facets of precarity. Findings also suggest the dearth of programs to support older adults living alone with cognitive impairment and the need to develop novel programs and interventions.

Cited by 55 publications

References 37 publications

The Effects and Meanings of Receiving a Diagnosis of Mild Cognitive Impairment or Alzheimer’s Disease When One Lives Alone

The Effects and Meanings of Receiving a Diagnosis of Mild Cognitive Impairment or Alzheimer’s Disease When One Lives Alone

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

Strengths and support of older people affected by precarity in South Louisiana

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