Individually-Tailored Support for Ethnically-Diverse Caregivers: Enhancing Our Understanding of What Is Needed and What Works

Family caregivers play a crucial role in maintaining older adults in the community, often at great cost to themselves. We discuss a program serving ethnically-diverse caregivers in New York, offering, on average, 11 case-management hr per client. Participants reported statistically significantly reduced stress and burden. Respite was the most requested service, belying an assumption underlying policies and services that families, particularly among minority populations, can and will care for their older members. Thus, services must be carefully tailored to meet actual caregiver needs, including provision of alternatives that reduce caregiver involvement. We discuss practice and policy implications.     

An Exploration of Congruence in the Community Service Use Attitudes of Older Spousal Caregiver–Care Recipient Dyads

ABSTRACT

This study explored within-dyadic congruence in community service use attitudes of older spousal caregiver–care recipient couples. Primary data collection consisted of in-person, standardized survey interviews with 30 caregiver–care recipient pairs. The study employed the intraclass correlation coefficient (ICC) to examine within-dyadic similarities on caregivers' and care recipients' responses to 29 items from the Community Service Attitude Inventory (CSAI). To measure the degree of match between caregiver and care recipient pairs, ICCs were calculated for each dyad (n = 30) and ranged from ?.26 to .84, indicating variation in the degree to which caregivers and care recipients displayed congruence on community service use attitude scores. The distribution of the Index of Dyadic Similarity was highly negatively skewed (skewness = ?2.159), indicating overall patterns of similarity at the dyadic level of analysis. Service use preferences and values across the seven attitudinal domains (confidence in service system, wait-and-see attitude, concern for opinion of others, pride in family independence, rejection of government assistance, worry and fear about outside help, and preference for informal care) were similar between dyadically related individuals. Although the overall trend of dyadic similarity was notable in this sample, variation in the Index of Dyadic Similarity suggests the need for future dyadic-level research to better understand within-dyadic congruence on specific attitude constructs and in relationship to service use outcomes. Specific methodological challenges relevant to conducting dyadic-level primary research with older spousal couples are discussed.     

A stress process model of family caregiver service utilization: factors associated with respite and counseling service use

This study examines whether caregivers' differential utilization of respite and counseling support services is associated with different situational stress processes. A multinomial regression analysis was conducted to compare respite users, counseling users, and those who used neither service, using data collected on a statewide random sample of 1,643 California caregivers providing assistance to individuals aged 50 or older. Compared with caregivers who used neither service, respite service users were more likely to have demanding care situations giving rise to physical symptoms of stress, and were more likely to use community services for the care recipient to augment their care. In contrast, counseling service users were more likely to be managing the meaning of their care situation by seeking out information about services and talking with a confidant about their situation, while coping with both emotional and physical symptoms of stress. Tailoring caregiver interventions to meet the support needs and coping strategies stemming from diverse caregiving situations and caregiver characteristics may increase the likelihood that those interventions will be effective in alleviating or preventing deleterious secondary stress frequently experienced by family caregivers.     

The Influence of Service Factors on Spousal Caregivers' Perceptions of Community Services

The literature clearly denotes that spouses differ from other family members in their reactions to caregiving, their patterns of service use and their assessment of specific services. Yet, despite their prevalence as caregivers, little is known about their unique perceptions of community services and the factors that impact their experiences with the service system. The purpose of this study was to explore the relative influence of (a) spouses' personal factors (e.g., gender, family support) and (b) service factors (e.g., one-on-one professional support), on spousal caregivers' perceptions of community services. The study employed a survey design with a sample of 73 spousal caregivers caring for their partners with dementia at home.

This study found that spousal caregivers have more negative perceptions of the service system when their in-home workers are not informed about their spouses' likes, dislikes and routines. This service factor was the most significant predictor of caregivers' service perceptions. The study further found that most spousal caregivers receive fewer than five consultations from a non-medical professional over a one year period. While spouses longed for more professional support, this service factor was not uniquely associated with service related stress. The policy and practice implications of these findings are discussed.     

Caregiver involvement in behavioural health services in the context of child welfare service referrals: a qualitative study

Human service agencies serve a growing number of adults with behavioural health needs. Despite these agencies' key role in identifying need and facilitating services, many individuals do not receive care or end services prematurely. Few studies have explored the experiences of families referred to behavioural health services by such agencies or the extent to which families' perceptions of service need align with those of treatment providers and frontline workers. This study presents findings from a qualitative study of caregivers involved with child welfare agencies who were referred to behavioural health services. Researchers reviewed agencies' case records and conducted in‐depth interviews with 16 caregivers, 9 child welfare caseworkers and 12 behavioural health treatment counsellors. Findings suggest that when deciding to engage in services, caregivers weigh not only their individual and family behavioural health needs but also potential agency intervention, including loss of child custody. Many professionals reported that involvement with a child welfare agency hindered the caregiver's disclosure of behavioural healthcare needs. Implications for managers and practitioners are discussed.     

Depression and caregiver burden among rural elder caregivers

Family caregivers of older adults frequently experience feelings of burden and depression though they may not come to the attention to health and service providers until they are at a point of crisis. Through a simple screening tool, the Maine Primary Partners in Caring (MPPC) project identified individuals providing care to older adults through rural primary care practices, in order to provide upstream interventions before caregivers were in crisis. This paper describes a sample (n=62) of rural family caregivers identified through their physicians' offices. High levels of caregiver burden and depression were reported. Family support and knowledge of caregiver tasks predicted decreased caregiver burden and depression, while isolation predicted increased caregiver burden. Implications of these results for gerontological social workers are outlined.     

Depressive Symptoms among Former Spousal Caregivers: Comparing Stressors,Resources, and Circumstances of Caregiving Cessation among Older Husbands and Wives

Little research focuses on the mental health of caregivers (CGs) who stop providing care to their community-dwelling spouse. We examine depressive symptoms of former primary CG spouses who stopped caregiving over a two-year follow-up period when the care recipient (CR): (1) no longer has functional problems; (2) continues having functional problems; or (3) dies. Using data from the Health and Retirement Study (2000–2014), we located 2,370 couples who were both 50+ at baseline and where one partner provided help with ADL and/or IADL limitations but did not do so two years later. OLS regressions stratified by gender indicated that both male and female former spousal CGs whose CR died had significantly more depressive symptoms than those who ceased caregiving when their spouse did or did not still have functional problems. Former wife CGs who were older and whose husbands had more baseline ADLs had fewer follow-up depressive symptoms; wife CGs whose husbands had a nursing home stay had more depressive symptoms. Former husband CGs who had provided longer monthly hours of care had fewer follow-up symptoms. Findings underscore the importance of targeting mental and physical health services to both former caregiving husbands and wives, especially after spousal death.     

In Their Own Words: Participants' Perceptions of the Impact of Adult Day Services

Despite the growth in the number of adult day services programs providing long-term care in the United States, researchers have struggled to consistently identify the benefits of the services to older adult participants. Instead of identifying participant outcomes driven by administrative databases, funding requirements or accreditation expectations, this study attempted to identify outcomes through the lived experiences of the older adult participants through one-on-one interviews after 3 months of attendance. The purpose of this qualitative study was to gain an understanding of the experiences of older adult participants and to build theoretical understandings that connect experiences with outcomes. Twenty-eight semistructured interviews were conducted with older adults attending 4 day health programs administered by 1 organization in a large mid-west City. Three main program experiences were identified: social connections with participants, empowering relationships with staff, and participation and enjoyment of activities and services. These experiences seemed to be associated with perceived improvements in psychosocial well-being and a perceived decrease in burden or dependence on the caregiver. The findings provide theoretical connections that are helpful for exploring the impact of adult day services based on participant perspectives. Results suggest a need for further examination of the role social workers play in supporting psychosocial services within adult day programs.     

Predictors of Depression Among Caregivers of Older Adults With Severe Mental Illness

Caregivers of older persons with severe mental illness (SMI) contend with the double challenge of providing assistance related to both the psychiatric condition and older age of their family member. Study explored factors influencing negative psychological outcomes experienced by caregivers (n = 96) of older adults with SMI. One-quarter of caregivers scored at or above the clinical point for depression. Low income, care recipient gender, poor health, problems dealing with care recipient’s symptoms and the interaction of health and problems dealing with symptoms were associated with higher rates of depression. Implications for service provision and future research are discussed.     

Quality of Life among Compound Caregivers and Noncompound Caregivers of Adults with Autism

ABSTRACT

Children diagnosed with autism spectrum disorder (ASD) are reaching adulthood and require some form of lifelong care. Many parents continue caring for their adult children with ASD for as long as physically possible. As parents age, many also may provide care for another loved one, such a spouse or parent. This study compares compound (those providing care for multiple loved ones) and noncompound parental caregivers (those providing care solely for an adult child with ASD) on six dimensions of quality of life (enjoys life, life is meaningful, ability to concentrate, accepts bodily appearance, satisfied with self, and frequency of negative feelings). Specifically, this study determined the extent to which compound and noncompound caregivers’ quality of life differed. The present study included 320 parents (age 50 or older) of adult children (18 or older) diagnosed with ASD who completed a web-based survey. T-tests for independent samples compared the six dimensions and overall quality of life between compound and noncompound caregivers. Results indicated that compound caregivers were less able to concentrate and had fewer negative feelings than noncompound caregivers. Further research is needed to determine the effects of caregiving on the multidimensional aspects of quality of life.     

Caregiving for Parents and In-Laws: Commonalities and Differences

This study examined support, stress, and well-being between adults who provide care for an aging and disabled parent and those who care for an aging and disabled parent-in-law. The study utilized a sample of individuals caring for a parent (n?=?77), individuals caring for an in-law (n?=?26) and a comparison group of noncaregivers (n?=?1,939) from the Midlife Development in the United States study. In-law caregivers provided more financial assistance but adult child caregivers provided more emotional support and unpaid work. Adult child caregivers reported poorer mental health and family strain; in-law caregivers reported more spouse support and less family strain.     

Providing Care for Persons with Dementia in Rural Communities: Informal Caregivers’ Perceptions of Supports and Services

Dementia is one of the costliest and most time-consuming diseases among older persons. Although informal caregivers provide the majority of care for persons with dementia, little is known about the self-perceived need for social services of caregivers of persons with dementia within rural areas. This pilot study examined the knowledge, access and intent of the practice-oriented service model of caregivers of persons with dementia in rural communities in the Midwest U.S. After a systematic training, researchers interviewed 11 rural caregivers of persons with dementia (n = 11). Data were analyzed using thematic analysis. Although similarities with other caregivers of persons with dementia were found, important differences suggesting unique issues among these rural caregivers of persons with dementia. Many participants found strength in their community, which often served as a safety net of support. Consistent with existing literature, participants expressed financial concerns, geographic barriers and lack of dementia-specific services when using formal services. The need for more specialized formal services in rural areas to supplement existing informal care networks is discussed. Policies and services based on rural caregivers’ unique concerns and challenges and that build upon their existing care networks are recommended.     

Primary Caregivers and Chinese Elders’ Demand on Community Services

Abstract

The most influential model explaining the elderly’s service use is Andersen and Newman's model. But the applicability of the model on elders’ demand on community services has not been tested, especially in developing countries such as China. This research tested the applicability of the model by studying how primary caregiver relations to the elderly influence Chinese community-dwelling elders’ demand on community services. With a total of 2,124 respondents aged 65 and older who reported primary caregivers, six primary caregiver relations were examined: son, spouse, daughter, daughter-in-law, unmarried son and daughter, and other. Data came from the 2014 wave of the Chinese Longitudinal Healthy Longevity Survey (CLHLS). Results indicated that: (1) Elders cared for by daughters-in-law showed a significantly stronger tendency of expecting community services than elders cared for by other caregivers among both rural and urban areas. (2) Elders were least likely to expect community services in two cases: urban elders taken care of by daughters and rural elders whose primary caregivers were unmarried sons and daughters. Since Chinese elders cared for by different caregivers tended to seek community care in different manners, future research may study how suitable community service programs can be developed to well meet the needs of various elderly groups.     

Unmet home care service needs of rural older adults with Alzheimer's disease: a perspective of informal caregivers

This study assessed unmet service needs of rural older adults with Alzheimer's disease (AD) and identified factors that were related to these needs. Data were collected from 109 informal caregivers of AD patients. Over half of the patients experienced unmet service needs in 1 or more areas of activities of daily functioning. Informal caregiver burden and patient's gender and functional status were significantly related to patients' unmet service needs. Patients' use of formal services was marginally related to their unmet service needs. To better address patients' service needs, a comprehensive needs assessment should be conducted with both patients and their caregivers.     

"Just like I'm saving money in the bank": client perspectives on care coordination services

Older adults face many challenges to community living. The literature has not sufficiently explored the roles of care coordination in the maintenance of housing and access to health care among older adults, particularly from their own perspectives. This qualitative study analyzes the findings from 25 interviews and 6 focus group discussions (48 participants) with a multiethnic sample of older adults in the New York City area. Care coordination services appear to assist older adults access health care, and to a lesser extent, maintain affordable housing. Disparities in access to care coordination appear to remain for immigrant, minority and suburban populations.     

Decision Making in Long-Term Care

Abstract

This article reports findings from a qualitative study of approaches to long-term care decision making used by older adults (N = 52) who continued to reside long-term in the community following nursing facility pre-admission screening. Older adults used different approaches to decision-making (autonomous, collaborative, and delegated) while seeking the most appropriate care setting. Factors such as mental capacity, the role of family caregivers, and self-advocacy skills influenced the choice of decision-making approach. Findings also illustrate how older adults moved through multiple pathways in order to reach their eventual long-term residence. These findings are discussed in terms of their implications for clinical practice and research.     

“Just Like I'm Saving Money in the Bank”: Client Perspectives on Care Coordination Services

Older adults face many challenges to community living. The literature has not sufficiently explored the roles of care coordination in the maintenance of housing and access to health care among older adults, particularly from their own perspectives. This qualitative study analyzes the findings from 25 interviews and 6 focus group discussions (48 participants) with a multiethnic sample of older adults in the New York City area. Care coordination services appear to assist older adults access health care, and to a lesser extent, maintain affordable housing. Disparities in access to care coordination appear to remain for immigrant, minority and suburban populations.     

Unmet Home Care Service Needs of Rural Older Adults With Alzheimer's Disease: A Perspective of Informal Caregivers

This study assessed unmet service needs of rural older adults with Alzheimer's disease (AD) and identified factors that were related to these needs. Data were collected from 109 informal caregivers of AD patients. Over half of the patients experienced unmet service needs in 1 or more areas of activities of daily functioning. Informal caregiver burden and patient's gender and functional status were significantly related to patients' unmet service needs. Patients' use of formal services was marginally related to their unmet service needs. To better address patients' service needs, a comprehensive needs assessment should be conducted with both patients and their caregivers.     

Do Caregivers Benefit More From Educational and Volunteer Activities Than Their Noncaregiving Peers?

Informal caregivers are a critical component of the US long-term care system, but caregivers often experience poor physical and mental health as a result of strain from the caregiving role. Engagement in community-based educational and volunteer activities contributes to older adult well-being, but previous studies have not assessed whether the effects of these types of engagement are different for older adults who are also caregivers. Using a sample of participants in educational and volunteer activities sponsored by a national nonprofit organization, we find that participants who are caregivers report more benefit from these community-based activities than their noncaregiving counterparts. Connecting caregivers to existing community-based activities may be an efficient strategy for improving caregiver well-being.