The impact of care–recipient relationship type on health-related quality of life in community-dwelling older adults with dementia and their informal caregivers

Lai, Aiping; Richardson, Julie; Griffith, Lauren; Kuspinar, Ayse; Smith-Turchyn, Jenna

doi:10.1007/s11136-022-03203-1

Cited by 6 publications

(20 citation statements)

References 39 publications

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“…37 Despite this observation, impact of carerecipient relationship types on the QoL of care of recipients is nevertheless relatively unexplored. 14 To our knowledge, this is the first longitudinal study examining the effects of the type of relationship on changes in QoL over time in PLWD.…”

Section: Discussionmentioning

confidence: 91%

“…Older adults' socio-demographic characteristics assessed at Round five were used in analyses: age range (65-69 years, 70-74 years, 75-79 years, 80-84 years, 85-89years, ≥90 years), sex (male, female), race/ethnicity (non-Hispanic white, non-Hispanic black, Hispanic, other), annual income in quartiles (<1st quartile, 1st-2nd quartiles, 2nd-3rd quartiles, >3rd quartile), education (below high school, high school, above high school and below bachelor's degree, bachelor's degree or above), marital status (married or living with a partner, unmarried including separated/divorced/widowed/never married), and living arrangements (alone, with spouse/partner only, with spouse/partner and others, with others only). The associations between these socio-demographic factors and QoL outcomes have been reported in various studies 14,24,25…”

Section: Socio-demographicsmentioning

confidence: 92%

“…13 Given the existence of a preceding relationship between the care recipients and their caregivers, it is likely that the dyad will influence each other, including their responses to QoL and well-being, the strain they experience in the relationship, and the level of congruence and conflict about the care being provided. 11,14 The care-recipient relationship type (i.e., the type of relationship/degree of kinship between caregivers and the care recipients, referred to from here on as "type of relationship") is known to associate with QoL in informal caregivers of PLWD. [14][15][16][17][18][19] Compared to caregivers, evidence about the impact of relationship factors on the care recipients or PLWD is limited.…”

Section: Introductionmentioning

confidence: 99%

“…11,14 The care-recipient relationship type (i.e., the type of relationship/degree of kinship between caregivers and the care recipients, referred to from here on as "type of relationship") is known to associate with QoL in informal caregivers of PLWD. [14][15][16][17][18][19] Compared to caregivers, evidence about the impact of relationship factors on the care recipients or PLWD is limited. 20 Existing information indicates that type of relationship influences the level of functional abilities in PLWD.…”

Section: Introductionmentioning

confidence: 99%

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Impact of Care-Recipient Relationship Type on Quality of Life in Community-Dwelling Older Adults With Dementia Over Time

Lai,

Griffith,

Kuspinar

et al. 2023

J Geriatr Psychiatry Neurol

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Introduction Maintaining quality of life (QoL) has been identified as the primary goal of care services for person living with dementia (PLWD). Methods A secondary analysis was conducted on five rounds of the National Health and Aging Trends Study (NHATS) over 4 years. A generalized estimating equation (GEE) was used to examine the prediction of relationship type on older adults’ QoL through four domains: mental health, general health, functional limitations, and pain. Results older adults cared for by an adult-child or multiple caregivers predicted increased risk for functional limitations after adjustment for their socio-demographic and dementia status (IRR = 1.53, CI [1.26, 1.86]; IRR = 1.36, CI [1.14, 1.61], respectively). The interaction between the relationship type and education was significant. Older adults with a high school education or below, who were cared for by an adult child, had a significantly higher risk of increasing functional limitations over 4 years compared to those cared for by a spouse/partner (contrast = .50, P = .01, 95% CI [.07, .93]; contrast=.52, P = .03, 95% CI [.03, 1.02]; respectively). Similarly, older adults with a high school education, who were cared for by multiple caregivers, also experienced a significantly higher risk of increasing functional limitations than those cared for by a spouse/partner (contrast = .44, P = .03, 95% CI [.02, .85]). Conclusion Our findings provide evidence of the significant contribution of relationship type on PLWD’s QoL changes over time. They also help to prioritize resource allocation while addressing PLWD’s demands by socio-demographics such as education level.

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Section: Discussionmentioning

confidence: 91%

Section: Socio-demographicsmentioning

confidence: 92%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 2 more Smart Citations

Impact of Care-Recipient Relationship Type on Quality of Life in Community-Dwelling Older Adults With Dementia Over Time

Lai,

Griffith,

Kuspinar

et al. 2023

J Geriatr Psychiatry Neurol

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“…Despite comprising 17% of caregivers of young adult patients (NAC 2020b) and 7% of caregivers overall (NAC 2020a), sibling caregivers are grouped into the vague "Other" category with friends, in-laws, etc. (Lai et al 2022;Litwin et al 2014). Baby boomer trends and increased life expectancy among individuals with disabilities are contributing to a rise in sibling caregivers (Namkung et al 2017), yet little is known about their unique experience.…”

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confidence: 99%

The others: Siblings are caregivers, too

Gebert

2023

Pall Supp Care

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We are currently facing a national caregiving crisis. I am one of the 53 million Americans providing unpaid care to a family member with a chronic or life-limiting illness (NAC 2020a). Research typically examines older adults caring for their spouse or partner; however, illness, thus caregiving, occurs at all stages in the lifespan. More than one-third of young adults aged 18-39 years are caregivers (AP-NORC 2018), yet they are underrepresented in caregiving scholarship. Young adult caregivers (YAC) in non-normative patient-caregiver relationships (e.g., siblings) are often left out of literature completely. Despite comprising 17% of caregivers of young adult patients (NAC 2020b) and 7% of caregivers overall (NAC 2020a), sibling caregivers are grouped into the vague "Other" category with friends, in-laws, etc. (Lai et al. 2022;Litwin et al. 2014). Baby boomer trends and increased life expectancy among individuals with disabilities are contributing to a rise in sibling caregivers (Namkung et al. 2017), yet little is known about their unique experience. As such, resources are not typically designed for their needs.At 23, I experienced this first hand, professionally and personally, as a research coordinator supporting patients undergoing a hematopoietic cell transplantation (HCT) and their caregivers, while simultaneously caring for my brother receiving the same treatment for leukemia. As a sibling caregiver, I experienced a unique sense of isolation, an Otherness, compared to more common patient-caregiver relationships. I needed support and found resources geared toward parents, spouses, adult children, or nonspecific Others -few included siblings' perspectives. I quickly discovered we typically do not qualify for caregiver aid; notably, siblings are excluded from federal policy altogether and not entitled to benefits allotted by the Family Medical Leave Act (FMLA) (Wage and Hour Division 2023b). As an Other, I was not eligible for FMLA when I became my brother's full-time caregiver during his HCT.Consequently, I continued working full time throughout his 5-week hospital stay and subsequent 2-month recovery in hospital housing. I hoped it would serve as a distraction, but my work directly reflected my life -there was no distracting from my reality. I faced challenges attempting to balance my professional, personal, and caregiving responsibilities, all while feeling excluded from not only my peers but also current caregiving research, resources, and policies. In this editorial, I aim to highlight the unique challenges I and other sibling caregivers face, our exclusion from research and policy, and the need for resources that are intended to support all caregivers.Caregivers almost always find themselves juggling work and caregiving responsibilities. Specifically, 6 out of 10 caregivers report impacts on their employment due to caregiving (NAC 2020a). Unsurprisingly, these caregivers also report struggling with higher levels of stress (Longacre et al. 2017). My work performance declined as compared to pre-diagnosis....

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Impact of caregiving on mental, self-rated, and physical health: evidence from the China health and retirement longitudinal study

Su,

Fan

2024

Qual Life Res

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The impact of care–recipient relationship type on health-related quality of life in community-dwelling older adults with dementia and their informal caregivers

Cited by 6 publications

References 39 publications

Impact of Care-Recipient Relationship Type on Quality of Life in Community-Dwelling Older Adults With Dementia Over Time

Impact of Care-Recipient Relationship Type on Quality of Life in Community-Dwelling Older Adults With Dementia Over Time

The others: Siblings are caregivers, too

Impact of caregiving on mental, self-rated, and physical health: evidence from the China health and retirement longitudinal study

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