Multimorbidity and associated informal care receiving characteristics for US older adults: a latent class analysis.

BACKGROUND: Older adults with varying patterns of multimorbidity may require distinct types of care and rely on informal caregiving to meet their care needs. This study aims to identify groups of older adults with distinct, empirically-determined multimorbidity patterns and compare characteristics of informal care received among estimated classes. METHODS: Data are from the 2011 National Health and Aging Trends Study (NHATS). Ten chronic conditions were included to estimate multimorbidity patterns among 7532 individuals using latent class analysis. Multinomial logistic regression model was estimated to examine the association between sociodemographic characteristics, health status and lifestyle variables, care-receiving characteristics and latent class membership. RESULTS: A four-class solution identified the following multimorbidity groups: some somatic conditions with moderate cognitive impairment (30%), cardiometabolic (25%), musculoskeletal (24%), and multisystem (21%). Compared with those who reported receiving no help, care recipients who received help with household activities only (OR = 1.44, 95% CI 1.05-1.98), mobility but not self-care (OR = 1.63, 95% CI 1.05-2.53), or self-care but not mobility (OR = 2.07, 95% CI 1.29-3.31) had greater likelihood of being in the multisystem group versus the some-somatic group. Having more caregivers was associated with higher odds of being in the multisystem group compared with the some-somatic group (OR = 1.09, 95% CI 1.00-1.18), whereas receiving help from paid helpers was associated with lower odds of being in the multisystem group (OR = 0.36, 95% CI 0.19-0.77). CONCLUSIONS: Results highlighted different care needs among persons with distinct combinations of multimorbidity, in particular the wide range of informal needs among older adults with multisystem multimorbidity. Policies and interventions should recognize the differential care needs associated with multimorbidity patterns to better provide person-centered care.

Feasibility of the Remembering Warmth and Safeness Intervention in older ADRD caregivers.

BACKGROUND: The number of older adults in the U.S. living with ADRD is projected to increase dramatically by 2060. As older adults increasingly assume informal caregiving responsibilities, community-based intervention to sustain caregiver well-being is a dementia research priority. OBJECTIVE: To evaluate the feasibility of the RWSI among older ADRD caregivers. The RWSI is informed by the Neurovisceral Integration Model, in which memories that engage safety signals cultivate feelings of safety and well-being. METHODS: A within-subjects pre/post-intervention design with older ADRD caregivers to evaluate feasibility (acceptability, demand, fidelity) and empirical promise (well-being). RESULTS: The feasibility of the RWSI, implemented with fidelity, was strongly endorsed, as participants attended each intervention session, after which reported experiencing feelings of warmth and safeness, and provided the highest possible acceptability ratings. Participant narratives provided corroboration. DISCUSSION: Findings support the feasibility of the RWSI in older ADRD caregivers, providing the basis for continued research.

Assessing Caregiving Burden in Family Caregivers of Depression and Schizophrenia in Pakistan.

BACKGROUND AND OBJECTIVE: Care for family members is a significant characteristic of families in South Asia. A family is one unit, and every other member is emotionally connected and expected to take care of each other. However, the provision of care to a family member with mental illness can be physically as well as emotionally exhausting and distressing for the Family Caregiver. The present study aimed to investigate the caregiving burden in family caregivers of depression and schizophrenia. METHOD: For this cross-sectional research, a purposive sample of 80 Family caregivers taking care of at least one family member with mental health problems of depression (n=40) and schizophrenia (n=40) were recruited for the present study. The age range of the sample was 15 to 60 years. All the respondents were literates who could read and write in Urdu. The scale used to measure the caregiving burden was Zarit Caregiving Burden Scale. The data was collected from the male (n=22) and female (n=58) family caregivers. To access data, family caregivers were approached at the psychological services clinics of Rawalpindi and Islamabad in private and public sector hospitals. RESULTS: The data were analyzed through descriptive and t-test analysis. Analyses of the data revealed that family caregivers of schizophrenia had a greater caregiving burden as compared to family caregivers of depression. Results also showed that females reported a higher caregiving burden as compared to male family caregivers. CONCLUSION: Family caregivers of schizophrenia undergo the severe burden of care and distress, and they may be considered a high-risk group for the development of mental health problems. Comprehensive intervention programs may be developed to involve them and safeguard their mental health.

Caregiving stress and maternal mental health during the COVID-19 pandemic.

It has now been extensively documented that parental mental health has deteriorated since the beginning of the COVID-19 pandemic. Although pandemic-related stress has been widespread, parents faced the unique challenge of navigating remote schooling. Parental oversight of children's education, loss of access to school supportive resources, and the challenges of remote learning may have been most problematic for parents of children with or at elevated risk for mental health difficulties. In the current study, we examined interactive effects of parent-reported pandemic-related caregiving stress and child internalizing and externalizing problems on parental depressive symptoms in a community-based cohort (N = 115) in the Northeast of the United States. Results indicated that parents experiencing higher levels of pandemic-related caregiving stress whose children exhibited elevated externalizing behaviors reported heightened levels of depressive symptoms. Greater child internalizing problems were associated with higher parental depressive symptoms independent of caregiving stress. These findings point to conditions that might heighten risk for parent mental health challenges in the context of ongoing remote or hybrid learning and pandemic-associated restrictions. Further, the findings point to conditions and characteristics that may be screened to identify and intervene with vulnerable families to mitigate mental health problems.

Motivators for family carers of persons with dementia in Kenya.

OBJECTIVES: The number of people with dementia is on the rise in Kenya and across Africa. Although family carers act as the main providers of dementia care in Kenya, there is still a significant knowledge gap regarding why family members care for someone with dementia. This study explores perceived drivers of care for people with dementia in a rural Kenyan context. METHODS: Participants were recruited in Makueni County, Kenya. Primary data were derived from a focus group discussion (FGD) and five individual interviews with family carers of people with dementia. To complement interpretation, triangulation occurred through using data from FGDs with healthcare workers and members of the general public. All audio recordings were transcribed verbatim and inductive thematic analysis performed using NVIVO 12. RESULTS: Using the Positioning Theory, we sought to generate information pertaining to motivation for becoming a family carer. Five themes emerged from the analysis and included: (i) self-fulfillment, (ii) familial obligation, (iii) cultural and religious beliefs, (iv) reciprocity, and (v) societal pressures. These themes described the nature of care given to people with dementia, based on what the participants perceived as compelling and/or motivating factors. CONCLUSIONS: Our findings describe the unique motivators of family carers for people with dementia in Kenya. The ability to find meaning in the caregiving experience could contribute to development of effective support systems, interventions and policies for dementia carers with the aim of improving the overall quality of dementia care in Kenya.

Perceptions about dementia clinical trials among underrepresented populations: A nationally representative survey of U.S. dementia caregivers.

Background: The research community has historically failed to enroll diverse groups of participants in dementia clinical trials. A unique aspect of dementia care research is the requirement of a study partner, who can attest to the care recipient's clinical and functional capacity. The aim of this study is to assess racial and ethnic differences and the importance of various trial considerations among dementia caregivers, in their decision to participate in clinical research as study partners. Method: We embedded a vignette about a hypothetical dementia clinical trial in a nationally representative survey of U.S. dementia caregivers, oversampling non-Hispanic Black and Hispanic caregivers. Dementia caregivers were asked about their willingness to participate in the trial with their care recipient and rated the importance of nine considerations in hypothetical decisions to participate. Caregiver demographic characteristics were analyzed as predictors of trial participation in a base demographic model. In a second reasons model caregiver demographic characteristics and the rated importance of the nine considerations were separately analyzed as predictors; both models used survey-weighted logistic regression. Result: The sample consisted of 610 dementia caregivers, including 156 non-Hispanic Black and 122 Hispanic caregiver participants. In the base demographic model, hypothetical trial participation was negatively associated with older caregiver age (OR (odds ratio) = 0.72, p = < 0.001). In the reasons model, the rated importance of a social responsibility to help others by participating in research was significantly associated with participation (OR = 1.56, p = 0.049), while the importance of the possibility of the care recipient experiencing serious side effects was negatively associated with participation (OR = 0.51, p = 0.003). In both models there was no significant difference in hypothetical participation between non-Hispanic Black and non-Hispanic White caregivers, or between Hispanic and non-Hispanic White caregivers. Conclusion: Hispanic and non-Hispanic Black dementia caregivers were not less likely than non-Hispanic White dementia caregivers to participate in a hypothetical dementia clinical trial. Our study suggests that failures to recruit diverse populations in dementia clinical research are not attributable to less willingness among members of underrepresented groups but may instead reflect structural barriers and historic exclusion from trial participation.

Strategies to promote treatment compliance: a grounded theory study with relatives of people with a serious mental health condition.

BACKGROUND: Treatment pressures encompass communicative strategies that influence mental healthcare service users' decision-making to increase their compliance with recommended treatment. Persuasion, interpersonal leverage, inducements, and threats have been described as examples of treatment pressures. Research indicates that treatment pressures are exerted not only by mental healthcare professionals but also by relatives. While relatives play a crucial role in their family member's pathway to care, research on the use of treatment pressures by relatives is still scarce. Likewise, little is known about other strategies relatives may use to promote the treatment compliance of their family member with a serious mental health condition. In particular, no study to date has investigated this from the perspective of relatives of people with a serious mental health condition. AIM: The aim of this study was to answer the following research questions: Which types of treatment pressures do relatives use? Which other strategies do relatives use to promote the treatment compliance of their family member with a serious mental health condition? How do treatment pressures relate to these other strategies? METHODS: Eleven semi-structured interviews were conducted with relatives of people with a serious mental health condition in Germany. Participants were approached via relatives' self-help groups and flyers in a local psychiatric hospital. Inclusion criteria were having a family member with a psychiatric diagnosis and the family member having experienced formal coercion. The data were analyzed using grounded theory methodology. RESULTS: Relatives use a variety of strategies to promote the treatment compliance of their family member with a serious mental health condition. These strategies can be categorized into three general approaches: influencing the decision-making of the family member; not leaving the family member with a choice; and changing the social or legal context of the decision-making process. Our results show that the strategies that relatives use to promote their family member's treatment compliance go beyond the treatment pressures thus far described in the literature. CONCLUSION: This qualitative study supports and conceptually expands prior findings that treatment pressures are not only frequently used within mental healthcare services but also by relatives in the home setting. Mental healthcare professionals should acknowledge the difficulties faced and efforts undertaken by relatives in seeking treatment for their family member. At the same time, they should recognize that a service user's consent to treatment may be affected and limited by strategies to promote treatment compliance employed by relatives.

Psychological distress among family caregivers of persons with Alzheimer's disease and related dementias in Uganda.

BACKGROUND: Alzheimer's disease and related dementias (ADRD) present growing global health challenges, especially in aging populations, such as Uganda. In Uganda, familial caregiving, predominantly undertaken by female relatives, is the primary form of support provided to patients with ADRD. Cultural stigma around dementia and limited access to support services amplify caregivers' challenges. This study examined psychological distress, depression, and quality of life (QoL) among family caregivers of patients with ADRD in Wakiso District, Uganda. METHODS: This cross-sectional study involved 90 caregivers from three sub-counties in Wakiso, selected through purposive sampling to capture diverse experiences. Participants included caregivers aged 18 years and older who were knowledgeable and had cared for a person with ADRD for not less than six months, with those providing more than 70% of physical care being prioritised. Data were collected using the Kessler Psychological Distress Scale, the Caregiver Dementia Quality of Life Measurement Scale, and the Center for Epidemiologic Studies Depression Scale, with an 80% response rate achieved through local collaboration. The statistical analyses focused on psychological distress, QoL, and depression. RESULTS: The study included 82.2% females and 17.8% males, with a median age of 52 years for females and 35 years, respectively. Females were more likely to be single or widowed, whereas males were more likely to be married. The study revealed a high prevalence of psychological distress and depression among caregivers (64.4%) regardless of sex. The analysis indicated that having children was a significant predictor of better QoL (OR 3.04, 95% CI 1.79-5.66, p = 0.034) and a lower risk of depression (OR 0.10, 95% CI 0.01-0.86, p = 0.036). No other sociodemographic factors were significantly associated with health outcomes across the models. CONCLUSION: Our findings revealed a heavy burden of psychological distress and depression among Ugandan caregivers of patients with ADRD, highlighting the need for structured support systems, including mental health services and gender-responsive interventions in low-resource settings.

Why is the composition of older adults' care network associated with psychological wellbeing: an application of the self-determination theory.

OBJECTIVES: Older care recipients have different types of care networks, varying from spouse-only to large mixed care networks, that add to different levels of wellbeing. Applying Self-Determination Theory (SDT) to the care context, we argue that the care network composition may foster or hamper the three basic needs for wellbeing: relatedness, autonomy and competence. METHOD: Data are from ten observations between 1992 and 2022 of the Longitudinal Aging Study Amsterdam (N = 18,434 observations from 4,837 older Dutch adults). Five care network types are used: no care, partner, informal, formal or privately paid care. Mixed-hybrid-multilevel regression analysis of depressive symptoms as measure of wellbeing is applied on care network type and loneliness, mastery and care sufficiency as indicators of the three basic needs for wellbeing. RESULTS: Receiving care from a partner care network is, compared to the formal care network, the most negatively associated with depressive symptoms, followed by informal care and privately paid care. Differences in care network types existed in loneliness and care sufficiency, but not in mastery, and in part explained the association between care network types and depressive symptoms. Results of between and within effects are comparable. CONCLUSION: Using a rich data set and advanced methodology support the hypotheses that formal care networks hamper wellbeing due to insufficient care and increased loneliness, in particular compared to partner and informal care. The role of mastery was less important, possibly because it does not measure care related level of control.

Examining predictors of loneliness among Older Americans Act National Family Caregiver Support Program participants.

Family caregivers may be at particular risk for social isolation and loneliness. Multiple factors can impact caregivers' health and well-being outcomes, including loneliness. Guided by an adaptation of the Stress Process Model of Caregiving, this study uses the 2019 National Survey of Older Americans Act Participants (NSOAAP)-Family Caregiver Support module to inform efforts to reduce loneliness through family caregiver support programs. A hierarchical multiple regression model reveals that caregivers who report more loneliness are more likely to be female, Hispanic, living alone, not a child or other caregiver of the care recipient, have a care recipient with 3+ ADL needs, experience more social life conflict related to caregiving, experience less joy in caregiving, feel less appreciated by the care recipient, feel less support in caregiving, and attend counseling. This study helps advance the goals of the National Strategy to Support Family Caregivers, and the findings underscore the importance of continuing and expanding efforts to address loneliness and related well-being outcomes among family caregivers.

Felt Age and its Psychological Correlates in Dementia Spousal Caregiving Dyads: Findings from the IDEAL Programme.

OBJECTIVES: Evidence suggests spouses influence each other's subjective views on aging. Aligned with the Theory of Dyadic Illness Management, we investigated for the first time similarities in felt age (how old people feel relative to their chronological age) between people with dementia and their spousal caregivers, and how each partner's felt age was related to psychological correlates in the other partner. METHODS: We used baseline (2014-2016) data from 1,001 people with dementia and their spousal caregivers who participated in the British IDEAL study. We ran linear regressions to analyze the extent to which the felt age of people with dementia and their caregivers were similar, and whether relationship quality was associated with the similarity. We utilized Actor-Partner Interdependence Models to analyze whether the felt age of people with dementia and their caregivers were associated with each other's well-being, satisfaction with life, and self-efficacy. RESULTS: The felt age of people with dementia was associated with the felt age of their caregivers (ß=.10; p=.001). Caregivers and people with dementia reported a more similar felt age when caregivers rated the caregiving relationship more positively (ß=.07; p=.043). Caregivers' felt age was associated with well-being (ß=.07; p=.024) and satisfaction with life (ß=.06; p=.044), but not with self-efficacy, in people with dementia. DISCUSSION: Felt age in caregivers and people with dementia may be interwoven, and important psychological variables in people with dementia are related to caregivers' felt age. Findings offer empirical evidence on dementia caregiving dynamics and how family relationships are related to views on aging.

Caring for a parent with dementia: The psychological well-being of adult children.

BACKGROUND: Caregiving for a parent with dementia has both positive and negative influences on psychological well-being of adult children and perceived social support plays an essential role in dementia caregiving process. OBJECTIVES: We examined how the degree of caregiving intensity influences mental health among Chinese adult children then further explored how perceived social support influences the relationship between intensity and psychological well-being. RESEARCH DESIGN AND SETTING: Cross-sectional study in Kunming, mainland China between November 2022 and January 2023. METHODS: We interviewed 320 adult dementia child caregivers. Linear regression and multiple mediation analysis using Hayes' process model were used to assess the relationship between caregiving intensity and psychological well-being, as well as the mediating role of perceived social support. RESULTS: The study found that caregiving intensity was positively associated with depression and negatively associated with life satisfaction. A lack of perceived social support exacerbated these effects for the adult children. Specifically, the caregivers reported higher caregiving intensity when they perceived less family support, which is in turn associated with greater depression and lower life satisfaction among the caregivers. Likewise, those who reported higher caregiving intensity was reported lower friend support, which was in turn associated with greater depression. CONCLUSIONS AND IMPLICATIONS: The findings emphasize the importance of social support, especially family support, and the necessity for health practitioners to provide targeted interventions on both negative and positive aspects of psychological well-being among dementia caregivers and to strengthen caregivers' resources for social support to enhance their well-being. While these findings are cross-sectional, it is logical to assume that those who perceive less support feel that their caregiving responsibilities are more intense, and that intensity could cause the caregiver to withdraw from friends.

Using Clustering Methods to Map the Experience Profiles of Dementia Caregivers.

Background and Objectives: Caregivers of persons living with dementia report wide-ranging lived experiences, including feelings of burden and frustration but also positivity about caregiving. This study applies clustering methodology to novel survey data to explore variation in caregiving experience profiles, which could then be used to design and target caregiver interventions aimed at improving caregiver well-being. Research Design and Methods: The k-means clustering algorithm partitioned a sample of 81 caregivers from the Midwest region of the United States on the basis of 8 variables capturing caregiver emotions, attitudes, knowledge, and network perceptions (adversity: burden, anxiety, network malfeasance; network nonfeasance; positivity: positive aspects of caregiving, preparedness and confidence in community-based care, knowledge about community services for older adults, and network uplift). The experience profile of each segment is described qualitatively and then regression methods were used to examine the association between (a) experience profiles and caregiver demographic characteristics and (b) experience profiles and study attrition. Results: The clustering algorithm identified 4 segments of caregivers with distinct experience profiles: Thriving (low adversity, high positivity); Struggling with Network (high network malfeasance); Intensely Struggling (high adversity, low positivity); Detached (unprepared, disconnected, but not anxious). Experience profiles were associated with significantly different demographic profiles and attrition rates. Discussion and Implications: How caregivers respond to support interventions may be contingent on caregivers' experience profile. Research and practice should focus on identifying public health strategies tailored to fit caregiver experiences. Clinical Trial Registration: NCT03932812.

Dementia Caregiving Experiences Among Korean Americans: Qualitative Inquiry Using the Stress Process Perspective.

Dementia caregiving involves a challenging and complex process, especially for immigrant families. Using a qualitative method, this study provides an in-depth exploration of caregiving experiences among Korean American caregivers of people living with dementia. Based on various sampling strategies, 16 Korean American caregivers of family members/relatives with dementia were recruited in the greater Los Angeles area. Guided by the stress process model and the constant comparative method, themes and subthemes were derived and categorized into four domains: (1) background/context; (2) perception/appraisal; (3) resources/coping, and (4) caregiver burden/reward. Findings suggest that intervention efforts should focus on educating and training dementia caregivers.

Qualitative Protocol of Chinese Parents and Siblings Experiences of Managing Challenging Behaviours of Adult Persons with Intellectual Disability in Hong Kong and Northern China.

BACKGROUND: While the literature has highlighted the immense challenges in caring for family members, it is still unclear what the needs of family carers of persons with intellectual disability and challenging behaviours are and what has worked for them. This study aims to examine 60 parents' and siblings' experiences in managing the challenging behaviours of their adult family member with intellectual disability whilst living at home. METHODS: A qualitative grounded theory approach using semi-structured interviews will be adopted. Purposive sampling will be used to recruit family carers who live with adult persons with intellectual disability and use one community service in Hong Kong. Three special schools for persons with intellectual disability from northern China will be approached. RESULTS: This study will aim to provide an in-depth understanding of the experiences of family carers and compare the different circumstances they face when managing the challenging behaviours of their adult relatives with intellectual disability in their family home. CONCLUSIONS: Although this study targets adults with intellectual disability, the findings will provide a point of reference for adolescents and younger persons who exhibit demanding and challenging behaviours and live with their families. Recommendations can guide the development of appropriate strategies to strengthen services for family carers.

WHO, WHEN, HOW: a scoping review on flexible at-home respite for informal caregivers of older adults.

BACKGROUND: As the world population is aging, considerable efforts need to be put towards developing and maintaining evidenced-based care for older adults. Respite services are part of the selection of homecare offered to informal caregivers. Although current best practices around respite are rooted in person centeredness, there is no integrated synthesis of its flexible components. Such a synthesis could offer a better understanding of key characteristics of flexible respite and, as such, support its implementation and use. METHODS: To map the literature around the characteristics of flexible at-home respite for informal caregivers of older adults, a scoping study was conducted. Qualitative data from the review was analyzed using content analysis. The characterization of flexible at-home respite was built on three dimensions: WHO, WHEN and HOW. To triangulate the scoping results, an online questionnaire was distributed to homecare providers and informal caregivers of older adults. RESULTS: A total of 42 documents were included in the review. The questionnaire was completed by 105 participants. The results summarize the characteristics of flexible at-home respite found in the literature. Flexibility in respite can be understood through three dimensions: (1) WHO is tendering it, (2) WHEN it is tendered and (3) HOW it is tendered. Firstly, human resources (WHO) must be compatible with the homecare sector as well as being trained and qualified to offer respite to informal caregivers of older adults. Secondly, flexible respite includes considerations of time, duration, frequency, and predictability (WHEN). Lastly, flexible at-home respite exhibits approachability, appropriateness, affordability, availability, and acceptability (HOW). Overall, flexible at-home respite adjusts to the needs of the informal caregiver and care recipient in terms of WHO, WHEN, and HOW. CONCLUSION: This review is a step towards a more precise definition of flexible at-home respite. Flexibility of homecare, in particular respite, must be considered when designing, implementing and evaluating services.

Gratitude Predicts Meaning in Life in Family Caregivers of Persons with Alzheimer's Disease.

Gratitude is a well-known and researched internal positive psychological resource. Empirical data, however, on the association between gratitude, meaning in life, and burden in family caregivers of persons with Alzheimer's disease is scant. The aims of this study were to (1) investigate the relationships among these variables in a sample of family caregivers of persons with Alzheimer's; and (2) determine if gratitude mediates the effects of perceived burden on meaning in life in this population. One-hundred and twenty-six adult family caregivers, most of whom were an intimate partner or adult child of a person with Alzheimer's, completed the Gratitude Questionnaire-Six Item, the Meaning in Life Questionnaire, the Zarit Burden Inventory, and other relevant measures. A series of OLS regression models, guided by the caregiver stress process model, were conducted. These analyses demonstrated that gratitude was a predictor of the presence of meaning in life among the caregivers in this study even when other key variables were considered. Furthermore, analyses revealed that gratitude fully mediated the effects of caregiver burden on the presence of meaning in life in this sample. Thus, clinicians should consider gratitude as an important internal resource for cultivating meaning in life in this population, especially when caregiver burden is present. Gratitude-bolstering clinical interventions should be further developed and tested as both stand-alone and complimentary additions to empirically supported psychoeducational approaches for supporting health and well-being in this population.

A Scoping Review to Contribute to Knowledge About Culturally Adapting Interventions for Latino Family Caregivers of Persons Living With Dementia.

INTRODUCTION: Few interventions have focused on Latino family caregivers to persons with dementia, addressing their unique needs. This review aimed to identify best practices in cultural adaptation to make recommendations for adapting interventions for Latino family caregivers of persons living with dementia. METHOD: This scoping review was conducted following the Joanna Briggs Institute Scoping Review guidelines, with findings extracted and summarized from 17 studies addressing cultural adaptation. RESULTS: Frameworks guiding the adaptations were comprehensive, addressing cultural values and traditions and the social context faced by Latino family caregivers. Features of the adaptations included diverse teams of researchers and community members, including Latino family caregivers, to inform the integration of cultural values into the content, mode, and place of intervention delivery. DISCUSSION: Culturally adapting evidence-based interventions will increase the number of available interventions for Latino family caregivers to persons living with dementia, thus reducing inequities in caregiver support.