Living in the Community With Dementia: Who Receives Paid Care?

Reckrey, Jennifer; Boerner, Kathrin; Szanton, Sarah L.; Bollens‐Lund, Evan; Leff, Bruce; Ornstein, Katherine

doi:10.1111/jgs.16215

Cited by 35 publications

(25 citation statements)

References 24 publications

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“…Home care can include both support with instrumental activities of daily living, such as helping with food preparation, and more basic activities of daily living, such as personal care with bathing and toileting or getting dressed. Needing support with personal care is usually more pronounced as the dementia progresses [6], and home care services are often employed when the PLWD becomes more dependent with daily activities [7] and/or the unpaid carer, a family member or friend, is unable to provide sufficient support [8]. However, across Europe, receiving formal care is often perceived as a threat to PLWD's independence and thus only accessed if required [9].…”

Section: Introductionmentioning

confidence: 99%

Decision-making for receiving paid home care for dementia in the time of COVID-19: a qualitative study

et al. 2020

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Background The lockdown imposed in the UK on the 23rd of March and associated public health measures of social distancing are likely to have had a great impact on care provision. The aim of this study was to explore the decision-making processes of continued paid home care support for dementia in the time of COVID-19. Methods Unpaid carers caring for a person living with dementia (PLWD) who were accessing paid home care before COVID-19 and residing in the UK were eligible to take part. Participants were interviewed over the phone and asked about their experiences of using paid home care services before and since COVID-19, and their decision-making processes of accessing paid home care since the outbreak and public health restrictions. Results Fifteen unpaid carers, who were also accessing paid care support for the PLWD before COVID-19, were included in the analysis. Thematic analysis identified three overarching themes: (1) Risk; (2) Making difficult choices and risk management; and (3) Implications for unpaid carers. Many unpaid carers decided to discontinue paid carers entering the home due to the risk of infection, resulting in unpaid carers having to pick up the care hours to support the person living with dementia. Conclusions This is the first study to report on the impact of COVID-19 on paid home care changes in dementia. Findings raise implications for providing better Personal Protective Equipment for paid carers, and to support unpaid carers better in their roles, with the pandemic likely to stay in place for the foreseeable future.

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Section: Introductionmentioning

confidence: 99%

Decision-making for receiving paid home care for dementia in the time of COVID-19: a qualitative study

et al. 2020

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“…Similar to education, this variable might be associated with an increased ability to pay for additional or alternative sources of help [ 36 ]. Previous studies in this area have shown that living arrangements are an important enabling factor, with persons with dementia living with others being associated with lower levels of unmet needs [ 33 , 37 ]. Findings from our multivariate analyses demonstrate that this relationship exists also for the needs of caregivers.…”

Section: Discussionmentioning

confidence: 99%

Examining Dementia Family Caregivers’ Forgone Care for General Practitioners and Medical Specialists during a COVID-19 Lockdown

Werner

Tur‐Sinai

AboJabel

2021

IJERPH

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The present study aimed to assess dementia caregivers’ reports of the prevalence and correlates of forgone care regarding visits to a general practitioner (GP) and to a specialist during the COVID-19 lockdown in Israel, using Andersen’s Behavioral Model of Healthcare Utilization. A cross-sectional study using an online survey was conducted with 73 Israeli family caregivers of persons with dementia residing in the community (81% Jews, 86% female, mean age = 54). Overall, one out of two participants reported having to delay seeking needed help from a GP or a specialist for themselves, as well as for their relatives with dementia, during the COVID-19 lockdown period. Among the predisposing factor, education was associated with caregivers’ reports regarding forgone care for themselves as well as for their loved ones. Living with the care-receiver and income level were the enabling factors associated with forgone care for caregivers. Finally, feelings of burden were associated with caregivers’ forgone care and feelings of loneliness and perceptions of the care-receiver’s cognitive functioning were associated with care-receivers’ forgone care. Our findings show that it is essential that this population receive appropriate practical and emotional support at times of distress and crisis to enable them to continue with their caregiving role.

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“…Individuals with dementia who are able to stay at home at the end of life have actively engaged caregiving support . Additionally, 25% of persons with dementia lived in residential care settings that may also reflect more engaged paid caregiver support in this population . Given that those with dementia had higher total caregiver use and hours of care, and that hospice provides few caregiving hours, it is possible these individuals opt for nonhospice care at the end of life such as skilled nursing or rehabilitation care.…”

Section: Discussionmentioning

confidence: 99%

“…45 Additionally, 25% of persons with dementia lived in residential care settings that may also reflect more engaged paid caregiver support in this population. 46 Given that those with dementia had higher total caregiver use and hours of care, and that hospice provides few caregiving hours, it is possible these individuals opt for nonhospice care at the end of life such as skilled nursing or rehabilitation care. Additionally, increased caregiving hours for dementia patients are more likely to reflect worsening cognitive and behavioral problems, 47 a less clear indicator of need for hospice care.…”

Section: Jagsmentioning

confidence: 99%

Family Caregiving at the End of Life and Hospice Use: A National Study of Medicare Beneficiaries

Kumar

Ankuda

Aldridge

et al. 2020

J American Geriatrics Society

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BACKGROUND/OBJECTIVES: Hospice care confers well-documented benefits to patients and their families, but it is underutilized. One potential reason is inadequate family support to make end-of-life decisions and care for older adults on hospice at home. We assessed the association between amount of family support and hospice use among a population of decedents and among specific illness types. DESIGN: Prospective cohort study using the National Health and Aging Trends Study waves 2011 to 2017, linked to Medicare claims data. SETTING: Contiguous United States. PARTICIPANTS: A total of 1,868 NHATS decedents. MEASUREMENTS: Outcome variable was 1 day or longer of hospice. Family caregiving intensity was measured by self-reported hours of care per week and number of caregivers. Covariates included probable dementia status and other demographic, clinical, and functional characteristics. RESULTS: At the end of life, hours of family caregiving and numbers of helpers vary widely with individuals with dementia receiving the most hours of unpaid care (mean = 64.5 hours per week) and having 2.4 unpaid caregivers on average. In an adjusted analysis, older adults with cancer receiving 40 hours and more of unpaid care/week as compared with fewer than 6 hours per week were twice as likely to receive hospice care at the end of life (odds ratio = 2.0; 95% confidence interval = 1.0-4.1). This association was not seen among those with dementia or among decedents in general. No significant association was found between number of caregivers and hospice use at the end of life. CONCLUSION: Older adults at the end of life receive a high number of hours of help at the end of life, many from more than one caregiver, which may shape hospice access. Better understanding of disparities in hospice use can facilitate timely access to care for older adults with a serious illness.

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Living in the Community With Dementia: Who Receives Paid Care?

Cited by 35 publications

References 24 publications

Decision-making for receiving paid home care for dementia in the time of COVID-19: a qualitative study

Decision-making for receiving paid home care for dementia in the time of COVID-19: a qualitative study

Examining Dementia Family Caregivers’ Forgone Care for General Practitioners and Medical Specialists during a COVID-19 Lockdown

Family Caregiving at the End of Life and Hospice Use: A National Study of Medicare Beneficiaries

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