Caring for an individual with mild cognitive impairment: a qualitative perspective of health-related quality of life from caregivers

Carlozzi, Noelle E.; Sherman, Carey Wexler; Angers, Kaley; Belanger, Mitchell P.; Austin, Amy; Ryan, Kelly A.

doi:10.1080/13607863.2017.1341468

Cited by 22 publications

(21 citation statements)

References 79 publications

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“…Finally, relatives of persons with MND in both countries expressed fears of becoming a caregiver. This is not surprising, as there is a universal understanding that assuming a caregiver rolea realistic possibility for relatives of persons with MND (Carlozzi et al, 2018;Seeher et al, 2013) is a stressful experience, impacting the caregiver's quality of life and wellbeing (Cross et al, 2018;Hooper and Collins, 2019). Interestingly, in a recent quantitative study conducted among 2,609 Asian American LP, aged 18-98, around a quarter of the participants expressed similar concerns (Jang et al, 2018).…”

Section: Fear Of Stigmatizationmentioning

confidence: 99%

Fear about Alzheimer’s disease among Israeli and German laypersons, persons with Mild Neurocognitive Disorder and their relatives: a qualitative study

Werner

Ulitsa

Shephet

et al. 2020

Int. Psychogeriatr.

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Objectives: Alzheimer’s disease (AD), the most common type of dementia, is one of the most feared diseases, obstructing help-seeking, and leading to discrimination. While research interest in fear of developing AD is increasing, little is known about its characterization, triggers, and consequences, especially among different cultures. In this study, we aimed at exploring and characterizing AD fear as experienced by laypersons (LP), persons with Mild Neurocognitive Disorder (MND), and their relatives, in Israel and Germany. Design: A qualitative study using focus groups (FGs) and semi-structured interviews was used. Thematic content analysis was conducted to extract key themes. Setting: Israeli and German not yet diagnosed people. Participants: The study included a total of 130 participants (63 Israeli and 67 German participants) representing 3 groups: LP (n = 82), persons with MND (n = 28), and relatives of persons with MND (n = 20). Results: Two overarching themes were identified across groups and countries: fear of developing AD and fear of stigmatization. Other types of fear, such as fear of a person with AD, fear about the impact of a diagnosis of AD on family members, fear of becoming a caregiver, and fear of losing one’s self-determination because of developing AD, were specific to a group type or country. Different types of fear were awakened by different triggers, and were dealt with different coping strategies.

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Section: Fear Of Stigmatizationmentioning

confidence: 99%

Fear about Alzheimer’s disease among Israeli and German laypersons, persons with Mild Neurocognitive Disorder and their relatives: a qualitative study

Werner

Ulitsa

Shephet

et al. 2020

Int. Psychogeriatr.

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“…Depression is frequently assessed in caregiving research, but other mental health outcomes, such as anxiety and loneliness, have not been explored as extensively. In qualitative research, focus group interviews have revealed that caregivers of those with mild cognitive impairment most frequently raise issues around social well-being (e.g., change in social roles; need for social support) when discussing "important aspects of health-related quality of life," followed in frequency by mental health concerns (e.g., anger, anxiety, and need for patience; Carlozzi et al, 2018). One study showed that coresident caregivers of individuals with dementia are less likely to seek social support (Snyder et al, 2015), but we are not aware of any longitudinal research that examines whether caregivers perceive or experience increased social support after the transition to caregiving.…”

Section: Caregiver Outcomesmentioning

confidence: 99%

Cognitive limitations in older adults receiving care reduces well-being among spouse caregivers.

Hawkley¹,

Zheng²,

Hedberg³

et al. 2020

Psychology and Aging

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A large number of older adults have physical and/or cognitive challenges and require help to manage everyday activities. Many older adults receive care from a spouse. Over the long term, this has adverse consequences for caregiver health and well-being. Less is known about the outcomes associated with the early transition to becoming a spousal caregiver. Nor is it clear how mild-cognitive decline worsens caregiver outcomes. The present study uses dyadic data from 588 couples in the National Social Life, Health, and Aging Project to compare mental and social well-being in marital partners who became a spousal caregiver versus those who remained noncaregivers or became caregivers for someone other than a spouse between 2010 and 2015. Cognitive ability was assessed using a validated version of the Montreal Cognitive Assessment. Moderated Actor-Partner Independence Models revealed that becoming a caregiver was associated with an increase in perceived stress in both men and women, and an increase in anxiety among men. Partners' cognitive limitations moderated, in a dose-dependent fashion, the association between becoming a caregiver and changes in well-being. Specifically, becoming a caregiver was associated with increased support from friends for wives at lower levels of husband's cognitive ability, and with increased anxiety for husbands at lower levels of wife's cognitive ability. Associations were independent of demographic characteristics and physical limitations. We discuss the value of using population-based samples to study the transition to caregiving and implications for interventions during the early transition to a caregiving role for even modestly cognitively impaired partners.

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“…In an aging population, cognitive impairment is a major driver of both health‐related quality of life (HRQOL) and health‐care costs. Even before the diagnosis of dementia, individuals with subjective cognitive complaints report worse quality of life; care partners of these individuals experience higher levels of anxiety and burnout . As individuals progress from subjective complaints to mild cognitive impairment to dementia, health utilization and cost increase dramatically.…”

Section: Introductionmentioning

confidence: 99%

Quality of education impacts late‐life cognition

Mantri

Nwadiogbu

Fitts

et al. 2019

Int J Geriat Psychiatry

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Objectives: Screening tests of global cognition detect racial differences in scores even after adjustment for educational attainment. Differential educational environments in adolescence may affect individual cognitive function. This study examines the impact of high school educational quality on late-life cognition among community-dwelling older adults. Methods/design: Data were collected from community-dwelling individuals from the Philadelphia Healthy Brain Aging (PHBA) cohort at the University of Pennsylvania Health System. The present analysis included subjects from the PHBA over the age of 55 years without a diagnosis of Parkinson's disease or dementia, who had attended high school in the City of Philadelphia. Cognition was assessed using the Montreal Cognitive Assessment (MoCA); clinical information was abstracted from the subject's electronic health record. High school information was obtained from the Philadelphia Board of Education. After univariable correlations were defined, we performed stepwise multiple linear regression models to determine the most significant predictors of late-life cognitive status. Results: A total of 130 subjects meeting inclusion criteria were included in the analysis. Years of education, race, educational level, school district, and financial status were all positively associated with MoCA. Significant negative associations included composite vascular risk, attendance at highly segregated schools, and historical poverty status. In stepwise multiple linear regression modeling, the impact of race on cognition remained significant when educational attainment was added to the model but was no longer significant once segregation status was added. Conclusions: This work suggests that academic and community factors beyond years of education have a marked impact on late-life cognition. KEYWORDS cognition, dementia, healthy aging, mild cognitive impairment, quality of education 1 | INTRODUCTION In an aging population, cognitive impairment is a major driver of both health-related quality of life (HRQOL) and health-care costs. Even before the diagnosis of dementia, individuals with subjective cognitive complaints report worse quality of life; 1-3 care partners of these individuals experience higher levels of anxiety and burnout. 4,5 As individuals progress from subjective complaints to mild cognitive impairment to dementia, health utilization and cost increase dramatically. In the United States alone, the monetary cost of dementia care, including both direct costs such as physician visits and medications, and also indirect costs such as informal care by spouses and children, was estimated at $236 billion in 2016. 6 Even conservative estimates assuming a plateau or decline in dementia prevalence acknowledge a doubling of inflation-adjusted care costs by 2040. 7 Additionally, on detailed neuropsychological testing and in advanced imaging studies,

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Caring for an individual with mild cognitive impairment: a qualitative perspective of health-related quality of life from caregivers

Cited by 22 publications

References 79 publications

Fear about Alzheimer’s disease among Israeli and German laypersons, persons with Mild Neurocognitive Disorder and their relatives: a qualitative study

Fear about Alzheimer’s disease among Israeli and German laypersons, persons with Mild Neurocognitive Disorder and their relatives: a qualitative study

Cognitive limitations in older adults receiving care reduces well-being among spouse caregivers.

Quality of education impacts late‐life cognition

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