Balancing formal and informal care: meeting needs in a resource-constrained program

Implications of the presence of informal help for the adequacy of formal home care services are examined in a public program that restricts service authorizations to needs that are not addressed by informal caregivers. Four areas of need were examined: local transportation, shopping, housecleaning, and dressing/bathing. The mixture of formal and informal help varied greatly from one area of need to another. Contrary to expectations, the frequency of informal help tended to be positively associated with the reporting of unmet need. The data suggest that in some areas of need, the reporting of unmet need reflects the view that the demands on informal caregivers are excessive and that additional formal services would provide them with welcome relief.     

Helping hospitalized elderly: discharge planning and informal support.

The extent to which informal support systems substitute or provide linkages to formal support systems has been a source of controversy in many studies. Even the extent to which the formal system of discharge planing in acute care hospitals links patients to formal care systems afterwards in unclear and suggests that existing models are ideal and theoretical rather than established empirically. The Posthospital Support Study examined hospital-based discharge planing and services received in the two month period after hospitalization for 170 patients with either heart conditions, or hip problems which required operations. Discharge planners were found to provide for services which were third-party reimbursable. Although planners adhered verbally to a wholistic model of assessing patient need and used an interdisciplinary planning structure, in actual planning they adhered to a narrow medical model while assuming an underlying social model of services from informal supports. The main informal caregivers varied in the extend to which formal as well as other informal providers supplemented their care, with caregiving spouses carrying most of the burden alone. Patients were most likely to assess themselves as either needing services they were already receiving, or those which they or their caregivers had to arrange for themselves.     

Inequity in long-term care use and unmet need: Two sides of the same coin

We investigate the determinants of several LTC services and unmet need using data from a representative sample of the non-institutionalised disabled population in Spain in 2008. We measure the level of horizontal inequity and compare results using self-reported versus a more objective indicator of unmet needs. Evidence suggests that after controlling for a wide set of need variables, there is not an equitable distribution of use and unmet need of LTC services in Spain; formal services are concentrated among the better-off, while intensive informal care is concentrated among the worst-off. The distribution of unmet needs for LTC services depends on the service considered and on whether we focus on subjective or objective measures. In 2008, only individuals with the highest dependency level had universal coverage. Our results show that inequities in most LTC services and unmet needs among this group either remain or even increase for formal services.     

Variation in Older Americans Act Caregiver Service Use,Unmet Hours of Care,and Independence Among Hispanics,African Americans,and Whites

Home- and community-based services (HCBS) are underused by minority seniors and their caregivers, despite greater rates of disability. We examined racial/ethnic variation among 1,749 Hispanics, African Americans, and Whites receiving Older Americans Act Title III caregiver services in 2009. In addition, we identified the volume of services used by caregivers, their unmet hours of respite care, and the relationship between service use and seniors' ability to live independently. Minority caregivers cared for seniors in urban areas who had higher rates of disability, poverty, and Medicaid coverage. Hispanics had the highest rate of unmet hours of care, while caregiver services were less likely to help African Americans remain at home. Minorities sought services through community agencies and were more educated than demographically similar national cohorts. Greater efforts to reach minority caregivers of less educated, disabled seniors in urban areas and through community agencies may reduce unmet needs and support independent living.     

Individual determinants of task division in older adults' mixed care networks

Older adults in need of long‐term care often receive help from both informal and formal caregivers. The division of tasks between these different types of caregivers may vary among such mixed care networks. Traditional models of task division suggest that formal and informal caregivers may either supplement each other or specialise in the care activities performed. Our study explores the determinants of various forms of task division in the Netherlands, using data collected in 2007 on 458 mixed care situations. Four types of task divisions of informal and formal care are distinguished: the complementation model [neither Activities of Daily Living (ADL) nor instrumental ADL (IADL) tasks shared, 14%], the supplementation model (both ADL and IADL tasks shared, 39%) and informal and formal specialisation (one type of task shared, one type of task not shared, 27% and 20% respectively). Marginal effects calculated with multinomial regression analyses show that the intensity of care provision, the informal caregivers' motives and the presence of privately paid help – more than care receiver's health – are related to type of task division with formal care. For example, when the informal caregiver provides more hours of help and out of a strong personal bond, the likelihood of informal specialisation increases, whereas the likelihood of formal specialisation decreases. When privately paid help is present, the complementation model is more likely, whereas the supplementation model is less likely to be found. Results are discussed regarding the differential consequences for co‐ordination and co‐operation in mixed care networks.     

Effects of respite care training on respite provider knowledge and confidence,and outcomes for family caregivers receiving respite services

Respite services are vital in supporting informal caregivers in need of a break from their caregiving duties. A respite training program aimed at developing respite provider competence and improving caregiver well-being was evaluated. Trainees experienced significant growth in their perceived respite knowledge and confidence to deliver respite from pretraining to posttraining. An objective core competency assessment confirmed posttraining knowledge in 10 core areas of respite. Family caregivers provided more favorable ratings on various measures of their well-being while receiving respite from a trained provider compared to before respite began and if respite were to end. Findings suggest that formal training prepares providers to deliver quality respite resulting in improved caregiver outcomes.     

Post-acute home care and hospital readmission of elderly patients with congestive heart failure

After inpatient hospitalization, many elderly patients with congestive heart failure (CHF) are discharged home and receive post-acute home care from informal (family) caregivers and formal service providers. Hospital readmission rates are high among elderly patients with CHF, and it is thought that use of informal and formal services may reduce hospital readmission during the post-acute period. Using proportional Cox regression analysis, the authors examined the independent and joint effects of post-acute informal and formal services on hospital readmission. No evidence of service impact was found. Rather, hospital readmission was associated with a longer length of CHF history and noncompliance with medication regimes. Research, policy, and practice implications are discussed.     

The evaluation of the National Long Term Care Demonstration. 6. The effect of channeling on informal caregiving.

Publicly funded programs that increase the use of formal community-based care by the elderly could cause less reliance on informal care. The effect of channeling on informal caregiving was examined using data collected from frail elderly and from their primary caregivers. The findings suggest some withdrawal from caregiving on the part of neighbors and friends during the demonstration. Overall, however, these reductions were not large relative to the increased use of formal community-based services.     

Mixed care networks of community‐dwelling older adults with physical health impairments in the Netherlands

As part of long‐term care reforms, home‐care organisations in the Netherlands are required to strengthen the linkage between formal and informal caregivers of home‐dwelling older adults. Information on the variety in mixed care networks may help home‐care organisations to develop network type‐dependent strategies to connect with informal caregivers. This study first explores how structural (size, composition) and functional features (contact and task overlap between formal and informal caregivers) contribute to different types of mixed care networks. Second, it examines to what degree these network types are associated with the care recipients' characteristics. Through home‐care organisations in Amsterdam, the Netherlands, we selected 74 frail home‐dwelling clients who were receiving care in 2011–2012 from both informal and formal caregivers. The care networks of these older adults were identified by listing all persons providing help with five different types of tasks. This resulted in care networks comprising an average of 9.7 caregivers, of whom 67% were formal caregivers. On average, there was contact between caregivers within 34% of the formal–informal dyads, and both caregivers carried out at least one similar type of task in 29% of these dyads. A principal component analysis of size, composition, contact and task overlap showed two distinct network dimensions from which four network types were constructed: a small mixed care network, a small formal network, a large mixed network and a large formal network. Bivariate analyses showed that the care recipients’ activities of daily living level, memory problems, social network, perceived control of care and level of mastery differed significantly between these four types. The results imply that different network types require different actions from formal home‐care organisations, such as mobilising the social network in small formal networks, decreasing task differentiation in large formal networks and assigning co‐ordination tasks to specific dyads in large mixed care networks.     

Expenditures in caring for patients with dementia who live at home.

OBJECTIVES. Given the national interest in progressive dementia, we estimated expenditures incurred in caring for dementia patients who live at home. METHODS. Primary caregivers of 264 patients from a university-based memory disorders clinic were interviewed at baseline and asked to keep service use diaries for 6 months; 141 caregivers who returned the diaries are the focus of this report. We examined both formal and informal services (distinguished by whether money was exchanged) and associated expenditures. RESULTS. Neither caregivers returning diaries nor their patients differed at baseline from those not returning diaries and their patients. Expenditures incurred over 6 months were extensive for both formal ($6986) and informal ($786) services. Out-of-pocket expenditures were high (e.g., in-home companion or sitter, adult day care, visiting nurse). Multivariable analyses indicated that patients with more severe symptoms of dementia and families with higher incomes reported significantly higher expenditures. CONCLUSIONS. The expense of caring for patients with progressive dementia living at home may be higher than previously estimated and frequently involves expenses paid directly by patients and their families.     

Important components for Dutch in‐home care based on qualitative interviews with persons with dementia and informal caregivers

BackgroundDementia care in the Netherlands is increasingly dependent on informal care and has the aim to keep persons with dementia at home for as long as possible. However, little is known about the preferences and needs of people with dementia living at home. Including people with dementia and their informal caregivers in research and policy creation could help to identify necessary forms of support, and tailor care to their personal preferences and needs.ObjectiveTo identify important components of in‐home care for persons with dementia and their informal caregivers in the Netherlands.DesignSemi‐structured interviews across the Netherlands, between March and June 2019 using thematic analysis.Setting and participantsPersons with dementia (n = 5) and informal caregivers (n = 14) were primarily recruited through dementia care organizations. Additionally, a case manager was recruited to reflect upon the semi‐structured interviews findings.ResultsFive themes concerning important care components were identified including the need for: a social network, formal care, information, emotional support and easier access to care. The complexity of the dementia care system posed a common difficulty for persons with dementia and informal caregivers.ConclusionThis study suggests that a dementia care package should be developed that includes both informal and formal care, the provision of information and emotional support, and help with access to care. The creation of this care package could help to tailor dementia care to the preferences and needs of the persons with dementia and their informal caregivers.     

How to stay motivated: A focus group study of Norwegian caregivers' experiences with community healthcare services to their parents with dementia

Motivation to provide care is a significant predictor of informal caregiving among family caregivers of persons with dementia. Adequate support is an important source of help and relief to caregivers, but fragmentation of dementia care services is common and better ways of supporting these caregivers are needed. Knowledge of adult-child caregivers' motivation and how this motivation is influenced by community healthcare services is lacking. The aim of this study is therefore to describe and explore adult children's experiences with community healthcare services for their home-dwelling parent with dementia and how these influence their caregiver motivation. The study applied a qualitative design based on three focus group interviews with 15 of these caregivers (40–69 years) in Norway in 2017. The study results indicate three categories supporting adult children's sustained motivation as caregivers: (a) caregivers prioritize their parent's need for healthcare services over their own need for support; (b) caregivers need acknowledgement through respect and involvement; and (c) caregivers need timely information and competence as the dementia progresses. To stimulate collaboration among adult-child caregivers, their parents with dementia, and community healthcare services, we claim that a relationship-centred care framework could be emphasised as a way of supporting sustained motivation among caregivers to parents with dementia as part of community healthcare services.     

Community Care of Older Women Living Alone

This paper compares the formal and informal care used by women living alone and women living with others using data from a household survey of women over 65. In contrast to those living with others, who use few formal services and receive most of their care from the children they live with, those living alone rely on a diverse group of informal caregivers and formal services, many of which are provided in their homes. Women living alone also report using mechanical devices more often, and are less confident that assistance will be available in the event of illness. Results are discussed from psychological and organizational perspectives.     

Community care of older women living alone

This paper compares the formal and informal care used by women living alone and women living with others using data from a household survey of women over 65. In contrast to those living with others, who use few formal services and receive most of their care from the children they live with, those living alone rely on a diverse group of informal caregivers and formal services, many of which are provided in their homes. Women living alone also report using mechanical devices more often, and are less confident that assistance will be available in the event of illness. Results are discussed from psychological and organizational perspectives.     

Informal caregivers' experiences of formal support in a changing context

As the location of long-term care of elderly people moves to homes and communities, and responsibility for care shifts to families, understanding the experience of people in this situation is necessary to ensure that support is appropriate, accessible and effective. The present paper explores informal caregivers' and recipients' relationships with formal support, drawing on thematic and narrative analysis of 30 in-depth interviews with self-identified family caregivers conducted over a year in a mid-size city in Ontario, Canada. All but six of these caregivers had had some interaction with formal support. The semistructured interviews explored caregivers' knowledge about, and perceptions and experiences of accessing and using formal support. Interpretation reveals how confusion and lack of knowledge about services, the inflexibility and lack of availability of services, and increasing pressure on the quantity and quality of publicly funded community-based resources combine to impact negatively on the experience of accessing and using formal support. Different ideas about the relative roles and responsibilities of seniors, informal caregivers and 'family' in general, and the state both shape and are shaped by policies and the situated realities of the provision of formal support. Providing care at home creates both opportunities and constraints for caregivers in their interactions with formal support. Lastly, this paper highlights the difficulties of interacting with publicly funded formal support as the costs of care are moved away from the state and onto families and individuals.     

Determinants of Unmet Needs among Slovenian Old Population

Background

Population ageing has significant effects on societies. The organization of care for dependent old people is one of the key issues for ageing societies. The majority of care for homebound dependent old people in Slovenia is still performed by informal carers, even though the use of formal services has been increasing over the last 20 years. The proportion and characteristics of people with unmet needs are important for the development of long term care social policy.

Method

The SHARE (Survey of Health, Ageing and Retirement in Europe) survey was used to assess the determinants of care arrangements and of unmet needs of the aging population in Slovenia. Multinomial regression analysis was used to evaluate individual and contextual determinants of care arrangements and unmet needs.

Results

The proportion of older people with unmet needs is 4%. As expected, “needs” (Functional impairment OR=4.89, P=0.000, Depression OR=2.59, P=0.001) were the most important determinant, followed by the predisposing factor “age” (age OR 1.15, P=0.000) and two enabling factors, namely:”community setting and “availability of informal care within household” (Urban areas OR=.47, P=0.021; Household size 3+ OR=2.11, P=0.030).

Conclusion

This study showed that there are a proportion of older people in Slovenia with severe needs for care, which are being unmet. As shown by the importance of enabling factors, social policy should encourage the development of formal services in rural areas and elaborate policy measures for informal carers.     

The unmet needs of family caregivers for frail and disabled adults

This study examines the efforts and needs associated with family care for disabled and frail adults. A survey of 117 primary caregivers focused on: the health problems associated with caregiving; the existence of informal, family support systems; the use of formal social services, and the need for additional social service programs. Most caregivers report physical and emotional problems due to caregiving ranging from hypertension and back problems to depression and mental exhaustion. The characteristics of caregivers at high risk for health problems are identified. Less than half of the caregivers have family or friends to assist them with caregiving. At least one type of social service was being used by over 80% of caregivers, with utilization patterns in male and female caregivers. Based on the study findings, several policy implications are reviewed.     

The association between cognitive impairment and community service use patterns in older people living in Australia

Family plays a vital role in supporting individuals with dementia to reside in the community, thus delaying institutionalisation. Existing research indicates that the burden of care‐giving is particularly high for those caring for a person with dementia. Yet, little is known about the uptake of community services by people with a diagnosis of dementia. Therefore, this study aims to better understand the relationship between cognitive impairment and the receipt of community care services. In order to examine the relationship, secondary data collected across Queensland, Australia, from 59,352 home‐care clients aged 65 and over during 2007–2008 are analysed. This cross‐sectional study uses regression analyses to estimate the relationship between cognitive impairment and service mix, while controlling for socio‐demographic characteristics. The dependent variables include formal services, informal care and total home‐care service hours during a 12‐month period. The findings of this study demonstrate that cognitive impairment is associated with accessing more hours of respite and day centre care but fewer hours of other formal care services. Additionally, the likelihood of support from an informal caregiver increases when a client becomes cognitively impaired. Therefore, this study demonstrates that there is an increased need for respite programmes to support informal caregivers in the future, as the population of people living with dementia increases. These findings support the need for investigations of new and innovative respite models in the future.     

Home alone: unmet need for formal support services among home health clients

In order to remain in the home without family or other informal support, home health clients must have access to essential formal services such as nutritional support and homemaking chores to supplement medical and nursing care. In this study, we looked at client-related factors associated with the need for formal support services, and factors associated with whether those needs are adequately met. Data were collected from 2,013 home health clients in Massachusetts. According to the assessment of the skilled nurses treating them, 85 percent of the clients needed one or more support services; some or all needs were not adequately met in nearly half. Significant factors contributing to unmet need included: being non-white, having Medicaid as payer, being in a health maintenance organization, having AIDS, receiving maternal/child health services, and having an acute condition. This research suggests that even clients receiving skilled nursing care may not have many or most of their supportive needs met, and that there are identifiable factors which decrease the likelihood of having adequate care provided.     

Determinants of need and unmet need among cancer patients residing at home.

De-hospitalization of cancer treatment, particularly for those with advanced disease, can complicate adjustment and strain the capacity of caregiver networks to meet patients' daily needs. Outpatient staff should be able to recognize patients who need help to meet their daily needs as well as those who are not getting enough help. This study describes the physiological and social determinants of need and unmet need for assistance among 629 cancer patients with advanced disease initiating a course of outpatient chemotherapy and/or radiation therapy. Areas of needs examined through telephone interviews with participating patients were: personal care, instrumental tasks (housework, shopping, and cooking), and transportation. Physiological factors (metastases, disease stage, and functional status) were associated with need for assistance in all three areas. Also, older age (over 65) and low income predicted need for help with personal care, and women were more likely than men to report illness-related need for assistance with instrumental tasks and transportation. Unmet need was primarily associated with patients' social support system (e.g., children living nearby and perceived resiliency of network helpers). These findings highlight the need for outpatient staff to evaluate patients' informal care resources as well as patients' symptoms and impairments in deciding who should be referred for home care services.