PMD46 PROCESS UTILITY DERIVED FROM PROVIDING INFORMAL CARE

Background: Understanding the determinants of the intensity of informal care may assist policy makers in the identification of supports for informal caregivers. Little is known about the utilization of informal care throughout the palliative care trajectory. Aim: The purpose of this study was to analyze the intensity and determinants of the use of informal care among cancer patients over the palliative care trajectory. Design: This was a longitudinal, prospective cohort design conducted in Canada. Regression analysis using instrumental variables was applied. Setting/participants: From November 2013 to August 2017, a total of 273 caregivers of cancer patients were interviewed biweekly over the course of the care recipient’s palliative care trajectory. The outcome was the number of hours of informal care provided by unpaid caregivers, that is, hours of informal care. Results: The number of hours of informal care increased as patients approached death. Home-based nursing care complemented, and hence, increased the provision of informal care. Patients living alone and caregivers who were employed were associated with the provision of fewer hours of informal care. Spousal caregivers provided more hours of informal care. Patient’s age, sex, and marital status, and caregiver’s age, sex, marital status, and education were associated with the number of hours of informal care. Conclusions: The intensity of informal care was determined by predisposing, enabling, and needs-based factors. This study provides a reference for the planning and targeting of supports for the provision of informal care.

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Multimorbidity Patterns and 6-Year Risk of Institutionalization in Older Persons: The Role of Social Formal and Informal Care

Journal of the American Medical Directors Association ◽

10.1016/j.jamda.2020.12.040 ◽

2021 ◽

Author(s):

Alessandra Marengoni ◽

Clare Tazzeo ◽

Amaia Calderón-Larrañaga ◽

Albert Roso-Llorach ◽

Graziano Onder ◽

...

Keyword(s):

Informal Care ◽

Older Persons

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Uptake of Childcare Arrangements—Grandparental Availability and Availability of Formal Childcare

Social Sciences ◽

10.3390/socsci10020050 ◽

2021 ◽

Vol 10 (2) ◽

pp. 50

Author(s):

Naomi Biegel ◽

Karel Neels ◽

Layla Van den Berg

Keyword(s):

Decision Making ◽

Informal Care ◽

Regression Models ◽

Local Level ◽

Formal Care ◽

Multinomial Regression ◽

Contextual Data ◽

Care Arrangement ◽

Combined Use ◽

Formal Childcare

Grandparents constitute an important source of childcare to many parents. Focusing on the Belgian context, this paper improves our understanding of childcare decision-making by investigating how formal childcare availability and availability of grandparents affect childcare arrangements. By means of multinomial regression models we simultaneously model uptake of formal and informal childcare by parents. Combining linked microdata from the Belgian censuses with contextual data on childcare at the level of municipalities, we consider formal childcare availability at a local level, while including a wide array of characteristics which may affect grandparental availability. Results indicate that increasing formal care crowds-out informal care as the sole care arrangement, whereas combined use of formal and informal care becomes more prevalent. Characteristics indicating a lack of grandmaternal availability increase uptake of formal care and inhibit to a lesser extent the uptake of combined formal and informal care. While increasing formal care substitutes informal care use, the lack of availability of informal care by grandparents may be problematic, particularly for those families most prone to use informal care.

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OLDER ADULTS PROVIDING INFORMAL CARE TO OTHERS IN THE COMMUNITY: PREVALENCE AND CHARACTERISTICS

Innovation in Aging ◽

10.1093/geroni/igy023.2715 ◽

2018 ◽

Vol 2 (suppl_1) ◽

pp. 736-736

Author(s):

V Edwards ◽

E Bouldin ◽

C Taylor ◽

L McGuire

Keyword(s):

Older Adults ◽

Informal Care

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Informal carer in Portugal: moving towards political recognition in Portugal

European Journal of Public Health ◽

10.1093/eurpub/ckz187.178 ◽

2019 ◽

Vol 29 (Supplement_4) ◽

Author(s):

I Fronteira ◽

J Simoes ◽

G Augusto

Keyword(s):

Informal Care ◽

Long Term Care ◽

Well Being ◽

Oecd Countries ◽

Low Fertility ◽

Informal Carer ◽

Term Care ◽

System Perspective ◽

Informal Carers

Abstract Informal care represents around 80% of all long term care provided in EU countries. Nevertheless, the needs for this type of care are expected to increase in the coming years in all OECD countries. Portugal is among the OECD countries with the highest ageing index (21.5% of the population was older than 65 years in 2017) due to high life expectancy and low fertility rates. As this demographic trend establishes, Portugal is expected to have more than 40% of the population over 65 years in 2037, and the expected prevalence of dementia is 3%, in 2050. In 2015 there were 2.1% of people over 65 receiving long-term care, representing 52% of all long-term care users. Around 38% were receiving care at home. It is estimated that 287,000 people in Portugal depend on informal carers. The agenda towards the official recognition of informal cares has been push forward in the country. Since 2015, several recommendations have been issued by the Parliament as well as legislative initiatives and a proposal for a Status of the Informal Carer is currently under discussion. We analyse the process of formulation of this policy in terms of sectors and stakeholders involved, definition and scope of informal carer, rights and obligations, role of the person being cared for, formal protection (e.g., labor, social, financial, training) and implementation. Recognition of the informal carer is a sector wide approach. One of the main features is the economic, social and labor protection mainly through reconciliation between work life and caring activities and promotion of the carer’s well being. Notwithstanding, and from a health system perspective, community health teams are to be the focal point for informal carers, supporting and providing specific training whenever needed. Despite its relevance, informal care should not be professionalized and responsibility of care should not be shifted from health services to informal carers. Key messages Needs for informal care are expected to increase in the coming years in OECD countries. Recognition of the informal carer is a sector wide approach.

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Opting out and topping up reconsidered: Informal care under uncertain altruism

Canadian Journal of Economics/Revue canadienne d économique ◽

10.1111/caje.12501 ◽

2021 ◽

Author(s):

Chiara Canta ◽

Helmuth Cremer

Keyword(s):

Informal Care ◽

Opting Out

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Impact of the Outbreak of the COVID-19 Pandemic on Formal and Informal Care of Community-Dwelling Older Adults: Cross-National Clustering of Empirical Evidence from 23 Countries

Sustainability ◽

10.3390/su13137277 ◽

2021 ◽

Vol 13 (13) ◽

pp. 7277

Author(s):

Aviad Tur-Sinai ◽

Netta Bentur ◽

Paolo Fabbietti ◽

Giovanni Lamura

Keyword(s):

Older Adults ◽

Home Care ◽

Informal Care ◽

Home Care Services ◽

Community Dwelling ◽

European Countries ◽

Care Services ◽

The Impact ◽

Community Dwelling Older Adults ◽

Informal Help

The COVID-19 pandemic has been dramatically affecting the life of older adults with care needs and their family caregivers. This study illustrates how the initial outbreak of the pandemic changed the supply of formal and informal care to older adults in European countries and Israel and assesses the resilience of these countries in providing support to their older populations by means of a mix of both types of care. We subjected data from the Survey of Health, Ageing and Retirement in Europe COVID-19 period (SHARE-COVID-19) across 23 European countries (including Israel) to descriptive and cluster analyses. In the first wave of the outbreak, a significant proportion of older adults in European countries received informal help, with an increase in the frequency of informal help received from children, neighbors, friends, or colleagues and a decrease in that received from other relatives. In most countries, difficulties in receiving home care services from professional providers were reported. Seven clusters were identified, reflecting different combinations of changes in the formal/informal care provision. In most countries, informal care is more resilient than home care services that formal providers deliver. Since they are an essential source for sustainable care, their challenges related to care should be addressed. The impact of the pandemic does not follow the traditional characterization of welfare regimes. A clustering effort may yield more understanding of the priorities that future care policies should exhibit at the national level and may identify potential systems for policymakers to enhance sustainability of care for community-dwelling older adults.

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Challenges Related to Informal Care Partners’ Involvement in End-of-Life-Care in Assisted Living

Innovation in Aging ◽

10.1093/geroni/igaa057.054 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 16-17

Author(s):

Molly Perkins ◽

Ann Vandenberg ◽

Candace Kemp ◽

Mary Ball ◽

Joanna Jungerman ◽

...

Keyword(s):

End Of Life ◽

Informal Care ◽

Caregiver Burden ◽

Assisted Living ◽

End Of Life Care ◽

Life Care ◽

Term Care ◽

Care Partners ◽

Relational Factors

Abstract Limited empirical evidence suggests that caregiver burden is greater for informal care partners (family and friends) in assisted living (AL) compared with other long-term care settings, particularly within context of end of life. Using qualitative data from a larger 5-year, 7-site study of end-of-life care in AL funded by the National Institute on Aging (R01AG047408), we investigate informal care partners’ involvement in end-of-life care and identify challenges related to informal caregiving that might contribute to care burden. Grounded theory analysis of ethnographic data and in-depth interviews (average interview length = 97 minutes) with 59 racially and ethnically diverse informal care partners (mean age = 60) shows that informal care partner involvement in end-of-life care varies across participants and over time and is shaped by multiple intersecting social and structural determinants. At individual levels, these include many personal, situational, and relational factors. Personal factors include but are not limited to care partners’ own physical and mental health and material resources (e.g., ability to pay for supplementary care). Situational and relational factors include care partners’ awareness (or lack thereof) of residents’ impending death and the quality of the caregiving relationship. AL and wider community-level factors include understaffing, staff turnover, inadequate hospice support, and lack of access to these services. We find that informal care partners navigate these caregiving challenges through a basic social process we conceptualize as “negotiating risks.” Strategies for easing caregiver burden and improving informal care partner and resident quality of life at end of life are implicated.

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