Change in the number of informal helpers of frail older persons.

Little is known of the extent to which helper networks of frail older persons change over time and what factors are associated with change. Few national estimates of the scope of change exist to aid policy planners. This study provides national estimates of changes in the size of the informal helping network of frail elderly by sociodemographic and functional status subgroups of this segment of the population. The data are drawn from the 1982-84 National Long Term Care Survey, which included longitudinal followup of 4,530 respondents living in the community at both times. Bivariate patterns of change over 2 years in the number of informal helpers were analyzed. Sociodemographic factors (sex, age group, and race) of the frail elderly may be more important influences on change in the number of helpers than functional status expressed in terms of their limitations in activities of daily living.     

The evaluation of the National Long Term Care Demonstration. 1. An overview of the channeling demonstration and its evaluation.

The channeling demonstration sought to substitute community care for nursing home care to reduce long-term care costs and improve the quality of life of elderly clients and the family members and friends who care for them. Two interventions were tested, each in five sites; both had comprehensive case management at their core. One model added a small amount of additional funding for direct community services to fill the gaps in the existing system; the other substantially expanded coverage of community services regardless of categorical eligibility under existing programs. The demonstration was evaluated using a randomized experimental design to test the effects of channeling on use of community care, nursing homes, hospitals, and informal caregiving, and on measures of the quality of life of clients and their informal caregivers. Data were obtained from interviews with clients and informal caregivers; service use and cost records came from Medicare, Medicaid, channeling, and providers; and death records for an 18-month follow-up period were examined.     

An evaluation of the attitudes and productivity of public health nurses in mental health service programs for the elderly]

The relationship between productivity of public health nurses (PHN) employed in mental health programs including home visit service for elderly people with dementia, and their attitudes toward mental health services was studied by surveying PHN at 31 health centers (HC) in Osaka Prefecture. A review of the services provided for 382 clients with dementia visited during a one-year period showed that PHN had provided the following services: home health care education: family education to promote understanding of the disease; management of interpersonal relations in the family; intervention to reduce the burden placed on the family members; medical facility referral; social service resource referral. For each of these PHN-provided services, the service had been provided to more than 60% of the clients. The percentage of clients who had been visited by a PHN accompanying a psychiatrist or a social worker was significantly higher at the 13 HC where PHN attach importance to counseling programs for the elderly, the 8 HC which provide group work services, and the 13 HC which hold case conferences more than six times a year than at other HC. In addition, the service provision rates for many PHN-provided services were significantly higher for these HC than for other HC. Analysis on the basis of whether PHN did or did not attach importance to the counseling program, showed that in either group, clients who had been visited by a PHN accompanying a psychiatrist or a social worker were more likely to have received PHN-provided services than other clients. Furthermore, at HC where PHN actively participated in mental health programs, PHN attitudes toward mental health care were more enthusiastic than at other HC. These results indicate that increased productivity of PHN employed in mental health programs and promotion of a multidisciplinary approach in client services are correlated with each other, and that both factors contribute to improving the quality of home visit services provided by PHN.     

Quality of life among older people in Sweden receiving help from informal and/or formal helpers at home or in special accommodation

The present study describes and compares quality of life (QoL) and factors which predict QoL among people aged 75 years and over who receive help with activities of daily living (ADLs) from formal and/or informal helpers. The subjects were living at home or in special accommodation in Sweden. A postal questionnaire was sent to a randomly selected and age-stratified sample of 8500 people. The response rate was 52.8% (n = 4337), and 1247 people [mean age (+/- SD) = 86.4 +/- 5.9 years] received help and indicated who helped them with ADLs. The findings suggest that a greater age, being a woman, being a widow/widower, a higher number of health-related complaints, needing more help with ADLs and a lower QoL were found among those receiving help in special accommodation in comparison with those receiving help at home. The extent of help was highest among those receiving help in special accommodation. Having help with ADLs every day at home indicated having help from both informal and formal helpers, while respondents receiving help from only informal or only formal helpers received the smallest amount of help with ADLs. A need for greater help with ADLs, and a higher number of self-reported diseases and complaints determined low QoL, whilst a social network (contact with more than three people) and a greater age determined high QoL. However, who the helpers were did not have a significant influence on QoL; it was the extent of help with ADLs that influenced QoL negatively and the density of the social network that influenced QoL positively.     

How do they manage? Disabled elderly persons in the community who are not receiving Medicaid long-term care services

OBJECTIVE: To expand our understanding of how low-income functionally impaired elderly persons are able to remain in the community. DATA SOURCES AND STUDY SETTING: In-person and telephone interviews with 25 elderly individuals who applied for but did not enroll in Connecticut's Home Care Program for Elders (CHCPE). All met the state's nursing home level-of-care criteria. STUDY, DESIGN: In-depth discussions with a small, purposefully selected sample of functionally impaired elderly persons in the community. PRINCIPLE FINDINGS: Many sample members with very high levels of impairment and multiple chronic health conditions remained in the community without CHCPE services because of Medicare home health services combined with extensive levels of informal care. Some sample members, particularly those with more limited informal care networks, did not receive the level of care that they needed. Virtually all were at high risk for medical complications, hospitalizations for acute illnesses, falls, and further loss of functioning. Further, in many cases, informal care networks were overextended, stressed and vulnerable to break down. All but a few of those we interviewed were not receiving services through the waiver program for financial reasons. Most met Medicaid's income criteria but had assets that exceeded Medicaid's $2,000 limit. Several were not participating due to concerns about estate recovery. CONCLUSIONS: Additional formal help is needed to avoid eventual nursing home placement for many sample members. This could be achieved by expanding the availability of case management services and/or relaxing program financial requirements. Further, efforts to reduce Medicare home health expenditures must recognize the heightened vulnerability of many beneficiaries for potentially costly adverse outcomes.     

The quality and adequacy of care received at home in the last 3 months of life by people who died following a stroke: a retrospective survey of surviving family and friends using the Views of Informal Carers Evaluation of Services questionnaire

Stroke is the third leading cause of death in the UK. Despite this, little is known about the care needs of people who die from or following a stroke. In early 2003, a total of 183 questionnaires were returned from a survey of 493 people who had registered a stroke-related death in four Primary Care Trusts, giving a response rate of 37%. This paper reports on 53 deceased from the survey who had lived at home during their last 3 months and who had been ill for more than 1 month. The data were analysed to explore the role of informal carers and the provision of community-based care in the last 3 months of life. Family and friends helped 82% of deceased with household tasks, 68% with personal care, 66% with taking medication and 54% with night-time care. By contrast, health and social services helped 30% with household tasks, 54% with personal care, 20% with taking medication and 6% with night-time care. Two-fifths (43%) of informants had to give up work or make major life changes to care for the deceased, and 26% of informants found looking after them 'rewarding'. Half (51%) reported that help and support from health services were excellent or good compared to 38% for social services. Results from the Regional Study of Care for the Dying indicated that people who died from a stroke in 1990 and their informal carers would have benefited from increased levels of community-based care and enhanced communication with care professionals. Our data suggest that informal carers continue to provide the majority of care for those who die from stroke, despite government initiatives to improve care for stroke patients and frail elderly people. Further research is required to explore best practice and service provision in caring for this group.     

Informal help in a local setting: The Dutch Social Support Act in practice

The Dutch Social Support Act provides municipal social support for people that experience limitations in daily life and cannot rely on informal help from their social network to compensate these limitations. In this paper, we study whether the probability and intensity (number of services) of receiving municipal social support for daily limitations is affected by informal help by the social network (i.e. family, friends and neighbors).This study took place in Breda, a middle large city in the South of the Netherlands. We combined data from the Municipal Personal Records Database, the registration containing information on demographics and municipal social support receipt of all inhabitants, with data from the Municipality Policy Monitor, a survey containing information on daily limitations and informal help (n = 5256).We find that people experiencing daily limitations are more likely to receive municipal social support and also receive a higher number of support services (intensity). However, the perceived help from family and friends does not decrease either the probability or intensity of receiving municipal social support. Informal help from neighbors decreased the likelihood of receiving of municipal social support, but not the intensity. This implies that the overall relation between daily limitations and municipal social support is not different for people who indicate that they can or cannot rely on their informal network for help.     

Children's help-seeking behaviour

A study of children's help-seeking behaviour with respect to bullying and parental arguing is reported. A number of specific hypotheses and open-ended questions were investigated with boys and girls aged8-17 years. Female helpers were preferred overall, thought a relationship existed between the child's and helper's gender. Parents, friends, and teachers were all chosen, and parent and peer helpers were seen as complementary rather than competitive sources of help. Reasons for choosing helpers were notably varied, but largely related to perceived qualities of the helper rather than the child's own needs. Children depicted helping as an active response on the part of the helper. These findings, are discussed and implications of practice noted.     

Factors influencing the utilization of visiting nursing and home-help services

PURPOSE: To identify the respective characteristics of clients using visiting nursing service and home-help service. Since the past, research on the utilization of in-home care services has usually focused on different services collectively. METHODS: Interviews using structured questionnaires were carried out with 134 elderly individuals who were selected in October 1997 from the list for home visit of public health nurses in a town with a population of 36,000. With regard to the utilization of visiting nursing as well as home-help service, the relationship with three factors of the conceptual Andersen's model (predisposing factor, needs factor, enabling factor) were examined. RESULTS AND DISCUSSION: Of the 134 subjects, 38.1% utilized visiting nursing service and 36.6% used home-help services. Use of visiting nursing service was significantly associated with variables such as declining ADL in the elderly, hospitalization within the past two years, less caregiving by family members, and less resistance to service-use by caregivers. On the other hand, use of home help service was related to less caregiving by family members and resources of visiting nursing. The clients who used both visiting nursing and home-help service had more difficulty with caregiving by family members compared to those who used only nursing service, and the latter were inferior in them of physical conditions, including ADL, to those who employed only home-helpers. CONCLUSION: The factors promoting the use of visiting nursing are different to some extent from those for home-help service. Clients using both are characterized by the presence of a broader variety needs.     

Service consumption patterns over time among adult day care program participants

A study of 59 adult day care (ADC) programs funded by area agencies on aging in Pennsylvania provides data which profiles the classic package of ADC services utilized by elder participants and traces the relationship between formal service consumption and the helping behaviors of family caregivers. Elder clients rejected 1 or more services offered by ADC staff 59% of the time. Consumption of homemaking, transportation, and counseling services escalated over time although total formal services used remained minimal. Family helpers performed both a greater range and intensity of support functions as compared to ADC programs (p less than .001). Program strategies and future research directions are suggested.     

Determinants of informal care-giving in various social relationships in the Netherlands

This study investigates determinants for offering help to family members, neighbours and friends, based on the Informal Care Model. We do so in pooled representative data for the Netherlands collected in 2014 and 2016 (persons >17 years, n = 13,165). One-third provides informal care to a person with health problems or impairments: partners (4%, n = 671), parents or children (16%, n = 2,381), distant relatives (6%, n = 858), friends or neighbours (6%, n = 839). Marginal effects show differences in the associations of care-giving relationships with sociodemographic factors, barriers and beliefs. Helping a partner is related to age, gender (older people and men are more likely to help) and household composition (singles help less often). Care for close family is given often by 45–64 year olds, women, multiperson households and those with strong family beliefs. Helping second-degree relatives correlates with age (young people help more often), barriers (those living with children help less often) and beliefs (people with professional background in care and people who attend church or mosque helping more often). Providing non-kin care is associated with age and education level (young people less likely to help, people with a high education more likely), barriers (having a fulltime job) and beliefs (work experience in care, church or mosque attendance and norms). The supply of care to partners and close family is mainly associated with sociodemographic factors and barriers while the provision of care to distant family and non-kin is also correlated with beliefs. If desirable policy is to create more informal care, investment in the combination of work and informal care, childcare and supportive arrangements for older community living couples is recommended. It also might be worthwhile to enhance beliefs about the usefulness of helping each other in times of need.     

Utilization of home care among people with HIV infection.

OBJECTIVE: To examine factors affecting the utilization of formal and informal home care services by people with HIV infection. DATA SOURCES AND STUDY SETTING: Study participants are adults with HIV infection receiving services at major providers of medical care in ten U.S. cities. Six interviews were conducted over an 18-month period (March 1991 to September 1992). DATA COLLECTION METHODS: Data on home care utilization, personal background characteristics, insurance status, and functional status are based on self-report. Disease stage is based on medical record data. STUDY DESIGN: This is an observational study using a panel survey design. Cross-tabular and longitudinal regression analyses (N = 1,727) were conducted to determine the effects of sociodemographic factors, functional status, disease stage, and insurance status on the receipt of home care from nurses, paraprofessionals, other professional providers, household residents, nonresident family and friends, and volunteers. PRINCIPAL FINDINGS: Over a 12-month period, 16 percent of respondents received home nursing visits; 11 percent received paraprofessional care (e.g., nurse's aides, helpers); 4 percent received help from volunteers; 11 percent from non-resident family or friends, and 21 percent from household members. Among the subgroup with AIDS (n = 837), corresponding percentages were 29, 20, 7, 17, and 29 percent for each provider type. In multivariate analyses, illness stage and functional status had strong effects on odds of utilization. Blacks and Hispanics were less likely than whites to have nursing care, but racial/ethnic group did not affect receipt of informal care. CONCLUSIONS: Home care utilization is concentrated among people with AIDS, compared to those at less advanced disease stages. In addition to functional limitations, fatigue is associated with the use of home care. Nursing and non-nursing home care have somewhat different correlates. Medicaid may provide better coverage of personal care services than private insurance.     

Extending Medicaid coverage for family planning services: Alabama's first four years

OBJECTIVES: This study examines whether Alabama's Medicaid family planning demonstration program reaches a different segment of the population than the health department-based Title X family planning program, whether service use rates differ across clients using care within and outside of the Title X provider system, and whether additional risk assessment and care coordination services provided by health department personnel increase the likelihood that family planning clients return for follow-up visits over time. METHODS: Administrative data from four years of operation of the program were used to examine characteristics of the clientele, differences in services used across provider types included in the program, and the impact of risk assessments and care coordination on return visit rates. RESULTS: The number of family planning service users increased dramatically over the four-year period, but were more similar demographically to Title X clients than to Medicaid maternity clients. Growth was greatest among clients of non-Title X providers. Newly covered services, including risk assessments and care coordination, were available mostly to Title X clients, and these services were associated with a greater likelihood that clients returned for care in subsequent years. CONCLUSION: Expanded provider networks can increase the number of low income women using family planning services while risk assessment and care coordination can improve the effectiveness of these services. However, enhanced services may not be equally available across provider systems. Additional outreach efforts are needed to reach women eligible for publicly supported family planning services who are not currently using these services.     

Experiences of end-of-life care in community hospitals

Concerns remain that health and social care services often fail people dying of chronic illnesses other than those with cancer. British government policy aims to improve end-of-life care and to enable people to make choices about place of care near the end of life, with the assumption that home is often the preferred option. However, some elderly people may lack suitable social networks, family carers and other resources to remain at home. Community hospitals offer a potentially accessible resource for local provision of end-of-life care. They have the advantage of being located within easy reach for family members, are staffed by local people and in most of them, general practitioners can maintain continuity of care. This paper examines patients' and family carers' experiences of end-of-life care in community hospitals. In-depth organisational case studies were conducted in six community hospitals in the south of England. Interviews were undertaken with elderly patients dying of cancer and other advanced conditions (n = 18) and their family carers (n = 11). Qualitative analysis of transcribed interviews were undertaken, using the principles of grounded theory. Patients and family carers valued the flexibility, local nature (which facilitated visiting) and personal care afforded to them. Most participants regarded community hospitals as preferable to larger district general hospitals. Our research reveals that these participants regarded community hospitals as acceptable places for end-of-life care. Finally, we discuss the implications of our findings for improving end-of-life care.     

Hoarding by elderly people

Although hoarding has been studied in adults, little is known about problems of hoarding by elderly people. This study used a structured telephone interview with elder services providers to investigate hoarding behaviors in relation to functional impairment, cognitive deficits, and physical and psychological conditions in 62 elderly clients. Most elderly hoarders were female, unmarried, and lived alone. Extensive clutter was associated with significant impairment, interfering with basic hygiene, and posing a serious physical threat for many elderly clients. Clients were rarely insightful about their collecting and often resisted change, rendering interventions generally ineffective. Never-married status was associated with more severe hoarding and greater impairment and possibly with worse outcomes of intervention efforts. Health and mental health implications of hoarding by elderly people and implications for treatment are discussed.     

Enlarging the caring capacity of the community: informal support networks and the welfare state

In common with most modern industrial societies, Great Britain is facing the unique late 20th century phenomenon of rapidly increasing numbers of people, especially very elderly people, requiring health and social care. The response in Britain has been to search for ways to enlarge the caring capacity of the "community" and, thereby, reduce the demands on public health and social services. Similar policy responses have been developed in other capitalist societies such as Canada, France, and the United States. Although a policy of "community care"--the provision of state services in people's own homes--was followed by governments of both major British political parties over the postwar period, under the right wing neo-monetarist regime of the present Thatcher administration the locus of policy has shifted toward encouraging greater reliance on the informal support networks of kin, friends, and neighbors. The reasons for this sea-change are explored and the assumptions that these networks are "natural" and necessarily the proper matrix of care are examined critically. This analysis draws on the results of recent research which indicates that informal support networks have significant limitations and that a policy based on withdrawing public services in the hope that these networks will fill the growing care gap is likely to be counterproductive. In conclusion, the author indicates the areas where further research is required to provide a sound basis for policy.     

A study of family support, health state and medical care among functionally dependent elderly in Shanghai, China]

The effect of family caregiver's attitudes to elderly on health conditions of functionally dependent elderly, relationships between family support and perceived burden among family caregivers, and factors related to family support were analyzed. Support in this study was defined as help directed at helping functionally dependent elderly achieve independence or self-care. In 1989, a survey was conducted of family caregivers in Shanghai. Functionally dependent elderly were collected by screening of people aged 65 years old and over, and family caregivers who were able to provide support as defined above were included as subjects (n = 468). The following results were obtained: 1. Caregivers with positive attitudes for support had a higher proportion having the ability to obtain physician care compared to those with low family support. The proportion of persons with bedfast condition, cognitive impairment, and abnormal behaviors did not appear to have a relationships to level of family support. 2. There was only a weak relation between family support and perceived burden scale of caregivers. 3. Among all factors, the strongest relationship to family support was with educational background. The health of caregivers and the family relationship between caregivers and functionally dependent elderly were also related to level of family support.     

The Gospel Oak Project: the use of health and social services by dependent elderly people in the community

The Gospel Oak Project surveyed a community sample of elderly people. Prevalence rates of depression and dementia were determined. Cases were assessed in detail and subject to long-term follow-up. Demographic information and morbidity data identified details of health service, social service and informal service contact. This paper reports the findings of the first survey of this population completed in 1987. It examines the effect of the increase in the very elderly on the need for health and social services, including contact with general practitioners. Duplication of service contacts are explored and the dependent elderly people not in receipt of services are identified. Finally, the survey investigates the effect of informal care on the level of service contact. Results confirm that contact increases with age, especially multiple service contact, implying a need for an expansion in future services. Although most depressed residents do not usually complain of depression, they have increased contact with health services but are not treated with anti-depressant medication. Few dependent elderly people receive no services; conversely there is no evidence of service duplication. Finally, receipt of informal care affected attendance at a day centre but no other service provision.     

Family support in general practice

At a time when social services are overburdened in Britain, family support in general practice offers one way to fill the gap. In the Well Family Project, a 'family support coordinator' worked within a general practice in Hackney, London. In the first eighteen months she saw 113 clients. Evaluation was by semistructured interviews with a sample of these clients and with professional workers. Comments from those interviewed indicate that the family support was valued. The general practice base was convenient and non-stigmatizing. By adopting a proactive approach, the project was able to work with clients who had previously 'slipped through the net'. Some of the professionals interviewed would have liked to provide the same help, but were unable to do so because of time and other constraints. Family support provided through general practice was well received by vulnerable families. Although there was overlap with the remit of health visitors and social workers, the protected time and the independence of the coordinator enabled clients to obtain the help they wanted. The replicability of this strategy now needs to be assessed.