Aging & Mental Health

Muralidhar, Malvika; Spector, Aimee; Hui, Esther K.; Liu, Lisa; Ali, Afia

doi: 10.1080/13607863.2023.2265322pmid: 37811724

Abstract Objectives As the life expectancy of individuals with intellectual disabilities (ID) continues to increase, there is an increased risk of developing dementia. While psychosocial interventions are gaining prominence, evidence is limited for people with both dementia and ID. This review discusses the effectiveness of direct psychosocial interventions and adaptations to facilitate delivery within this population. Methods The review followed the PRISMA guidelines. Five electronic databases, grey literature, and reference lists of included articles were searched for relevant studies. 10 eligible studies were appraised and analysed by narrative synthesis. Results Ten distinct interventions were identified and categorised based on their purpose and delivery. All interventions were beneficial in improving a range of outcomes, though some studies were of low quality and most had small samples. Common adaptations included simplification of tasks and material, higher staff-to-client ratio, and alternative communication methods. Conclusion There is emerging evidence for several psychosocial interventions for people with ID and dementia, though further research is required on effectiveness and generalisability. The adaptations discussed may guide implementation into routine care and contribute to current policies and guidelines on improving ID and dementia care.

Light, Sophia W.; Tomasino, Francesca; Wescott, Annie; Bernstein Sideman, Alissa; Vela, Alyssa; Possin, Katherine L.; Penedo, Frank J.; Wolf, Michael S.

doi: 10.1080/13607863.2023.2268050pmid: 37874117

Abstract Objectives Latinos in the USA are 1.5 times more likely to develop Alzheimer’s Disease and Related Dementias (ADRD) than non-Latino Whites. This systematic review aims to summarize current understanding of the perceptions, knowledge, beliefs, and attitudes about ADRD and brain health of Latinos to inform public health efforts addressing disparities. Methods Searches were completed across six databases (Medline, PsycINFO, WoS, LILACS, ProQUEST, and CINAHL). Studies were required to capture attitudes and/or knowledge of ADRD or brain health among US-based Latino adults who were not cognitively impaired and were not caregivers or healthcare providers. Results were synthesized narratively. Results A total of 5528 unique records were identified. Following de-duplication and screening, 24 articles met the inclusion criteria for this review. Overall, knowledge about brain health and ADRD among Latinos is quite mixed. A consistent finding was that participants recognized memory loss as a symptom of cognitive impairment, but demonstrated limited recognition of other signs of impairment. The studies also highlighted variable knowledge of protective factors for maintaining brain health. Conclusions Opportunities exist to increase knowledge of ADRD signs and symptoms, and awareness of risk and protective factors. Given the heterogeneity of Latinos in the USA, more research is warranted to better elucidate nuances in conceptualizations of brain health and aging among diverse Latino subgroups.

Waddington, Claire; Flanagan, Katie; Clements, Henry; Harding, Emma; van der Byl Williams, Millie; Walton, Jill; Crutch, Sebastian; Stott, Joshua

doi: 10.1080/13607863.2023.2280925pmid: 37970882

Abstract Objectives This review seeks to synthesise qualitative studies that focus on the experience of grief and loss in people living with dementia. Methods Included studies were quality appraised, synthesised and analysed using inductive thematic analysis. Results 19 studies were selected for inclusion in the final review and metasynthesis, including 486 participants (115 participants living with dementia, 152 family carers, 219 professionals). Five key dimensions of grief in people living with dementia were identified during the analysis process: grieving for the person I used to be, grieving for how others see me, grieving for the person I will become, grieving for those who have died and what helps me with my grief. Conclusion It is evident that people living with dementia can experience grief related to a range of previous, current and anticipated losses. Many of the studies included in this review did not directly include people living with dementia in their research and did not ask participants directly about their experience of grief and loss. As grief is a highly personal and individual experience, further research addressing the experience of grief that directly includes participants living with dementia is required, in order to improve awareness of grief-related needs and to develop and deliver support to meet these needs.

Wammes, Joost D.; Laws, Holly B.; van Hout, Hein P.J; MacNeil Vroomen, Janet L.; Monin, Joan K.

doi: 10.1080/13607863.2023.2248047pmid: 37622184

Abstract Objective This study examined the dyadic association of self and informal caregiver proxy-reported met needs in persons living with dementia on the health-related quality of life (HRQOL). Methods A total of 237 persons with dementia and their caregivers were included from a previous observational study. HRQOL was assessed by the EuroQol-5D and the number of met needs by the Camberwell Assessment of Needs for the Elderly. The Actor-Partner Interdependence Model framework was used to analyze the effect of an individual’s self or proxy-reported met needs on their own HRQOL (actor effects), and an individual’s self or proxy-reported met needs on the other dyad member’s HRQOL (partner effects). Results The number of self-reported met needs by persons living with dementia was negatively associated with their own HRQOL (actor effect b = −0.200, p < 0.001), and the HRQOL of informal caregivers (partner effect b = −0.114, p = 0.001). The number of proxy-reported met needs by informal caregivers was negatively associated with their own HRQOL (actor effect b = −0.105, p < 0.001) but not the person living with dementia’s HRQOL (-0.025, p = 0.375). Conclusion Study findings suggest that both self-reported and informal caregiver proxy-reported met needs in persons living with dementia should be considered in research and practice because they have different implications for each dyad members’ HRQOL.

Matta-Singh, Tara D.; Sharma, Shubam; Ali, Talha; Piechota, Amanda; Abboud, Anissa; Fried, Terri; Monin, Joan K.; Mroz, Emily L.

doi: 10.1080/13607863.2023.2256252pmid: 37712688

Abstract Objectives To characterize core themes conveyed by caregivers when sharing narratives of high and low caregiving points and to describe how caregivers structured these narratives. Methods Using consensual qualitative research and thematic analysis, high and low point narratives from 32 former caregivers of persons living with dementia were examined. Results High point narrative themes involved strengthening relationships with care partners, fulfillment derived from care, lighthearted moments, and fostering the care partners’ joy and dignity. Low point narratives involved family conflict and lack of support, personal deficiencies, loss of the caregivers’ ‘pre-caregiving’ life, health system failures, and alienation from their care partner. Across high and low points, caregivers’ narratives were structured by three types of narrative elaborations; details unnecessary for factual recall but which enriched narrative sharing. Conclusion Themes across high and low point narratives encompassed relational issues, how caregiving shaped the caregiver’s self-efficacy, and factors that made navigating caregiving easier or more difficult. Both high point and low point narration often involved describing positive aspects of caregiving (PAC). Narrative elaborations may be used by former caregivers to engage in deeper evaluation of their caregiving experiences. We consider how psychotherapeutic techniques can help former caregivers reframe maladaptive narratives, supporting their mental health.

Georges, Daniela; Doblhammer, Gabriele

doi: 10.1080/13607863.2023.2271866pmid: 37885248

Abstract Objective In aging Germany, a large part of care is provided by informal caregivers. We aimed to analyze the main drivers of the mental health of caregivers and their intersection with migration status. Methods Using panel data covering 18 years (n = 25,659 individuals, aged 16 to 103 years; mean age of 49.5 years) and applying linear regression models we investigated the association between informal caregiving and mental health. We compared non-migrant Germans (NMG) and ethnic German immigrants (EGI), who are the oldest immigrant group in Germany. Informal caregiving was defined as living with a person in need of care or by providing care for ≥2 h per day; the main health outcomes were mental health and mental health changes, measured by a metric scale of six items. Results Even accounting for selection into caregiving, short-term care seemed to be disadvantageous only for NMG, while long-term care was generally associated with poorer mental health, with a particular disadvantage for EGI. Socio-economic characteristics and personality traits affected mental health changes, but only weakly the caregiving-health association. Conclusion Informal caregiving presents a health burden which is not explained by socio-economic characteristics and personality, but by migration status. Policies to promote health in an aging society need to consider differences in short- and long-term care provision and between migrants and the non-migrants.

Bhattacharyya, Kallol Kumar; Molinari, Victor; Peterson, Lindsay; Fauth, Elizabeth B.; Andel, Ross

doi: 10.1080/13607863.2023.2277265pmid: 37921356

Abstract Objectives: Nursing home (NH) residents’ capacity to communicate deteriorates with dementia. Consequently, NHs with high proportions of people living with dementia (PLWD) may receive fewer resident complaints, and/or investigating complaints may be challenging. We assessed NHs’ proportion of PLWD in relation to total and substantiated complaints. Methods: Data were from the ASPEN Complaints/Incident Tracking System and the Certification and Survey Provider Enhanced Reports (2017). NHs (N = 15,499) were categorized based on high (top-10%), medium (middle-80%), and low (bottom-10%) dementia prevalence. Negative binomial Poisson regression assessed complaint patterns in relation to NHs’ high/low (vs. medium) proportions of PLWD and other facility/resident characteristics. Results: Compared to NHs with medium-dementia prevalence, NHs with low proportions of PLWD had higher total (average marginal effect [AME] = 0.16, p < 0.001) and substantiated (AME = 0.30, p < 0.001) complaints, whereas NHs with high proportions of PLWD had fewer total (AME= −0.07; p < 0.05) and substantiated (AME= −0.11, p < 0.05) complaints. Also, NHs’ profit status, chain-affiliation, size, staffing, and resident ethnicity were associated with total and substantiated complaints. Conclusion: The association between high proportions of PLWD and lower NH complaints suggests either that these NHs have higher overall quality or that complaints are underreported. Regardless, surveyors and families may need more involvement in monitoring higher dementia prevalence facilities.

Dieker, JoAnna L.; Yun, Stacy W.; Weber, Kendall L.; Qualls, Sara

doi: 10.1080/13607863.2023.2282683pmid: 37993412

Abstract Objectives Family conflict is an understudied aspect of the caregiver experience. Drawing from the stress process model, the present study examined the prevalence and correlates of conflict over illness beliefs (e.g. conflict over the care recipient’s illness and need for facility placement) and family care strategies (e.g. lack of involvement and support from family members). Methods Adult child and spouse caregivers (N = 579) of persons with physical or cognitive impairment from clinic and internet samples completed the Caregiver Reaction Scale (CRS) to assess each topic of conflict and burden. Results Most caregivers reported conflict with family members over care strategies (63%) or illness beliefs (55%). Clinic caregivers reported greater illness beliefs conflict than online caregivers. Adult children reported greater illness beliefs and family care strategies than spouses. Male caregivers were more likely than female caregivers to report care strategies conflict. Caregiver overload was significantly associated with family care strategies conflict. Both conflicts were positively associated with caregiver burden. Conclusions Findings further support that family conflict is a widespread concern associated with burden among online and help-seeking caregivers. Caregiving relationship type and gender may increase likelihood of each conflict. Findings inform recommendations for clinical intervention and assessment of family caregivers.

Hong, Y. Alicia; Shen, Kang; Han, Hae-Ra; Ta Park, Van; Lu, Huixing Kate; Cleaveland, Carol

doi: 10.1080/13607863.2023.2285918pmid: 38038630

Abstract Objectives Chinese American family caregivers of persons with Alzheimer’s disease and related dementia (ADRD) are a vulnerable but understudied population. The goal of this qualitative study was to examine their caregiving experiences and psychosocial distress process and explore intervention strategies. Methods In-depth individual interviews were conducted with 18 Chinese American dementia caregivers. All interviews were transcribed verbatim; thematic content analysis was conducted to construct a conceptual framework. Results All participants reported high levels of caregiving stress associated with care-recipients’ advanced symptoms and required assistance in activities in daily living. The relationship of caregiver and care-recipient was strained in their roles transition. The complex healthcare system, insurance policies, and a lack of linguistically appropriate services aggravated their psychosocial distress. Chinese cultural norms on ‘family harmony’ hindered their seeking of social support. Prolonged caregiving stress led to physical and mental impairment, including poor sleep, depression, and chronic conditions. Participants described their caregiving experience as ‘a lonely journey’ with a pervasive sense of hopelessness and withdrawal; their distress process was positively or negatively influenced by their coping strategies. All participants were eager for any kind of support; especially culturally appropriate programs that could improve their caregiving skills, self-care, and access to services. Conclusion Our data suggest that Chinese American dementia caregivers, especially those with limited English proficiency, experience elevated psychosocial distress, which was aggravated by the barriers to social support and health services due to their immigrant and minority status. Culturally appropriate targeted intervention is urgently needed for this underserved and vulnerable population.

Choi, JiWon; Ta Park, Van; Nguyen, Edward; Jung, Andrew; Tsoh, Janice

doi: 10.1080/13607863.2023.2252772pmid: 37655598

Abstract Objectives Disparities impacting dementia health care exist in racial/ethnic minority groups, including Asian Americans, an understudied population in Alzheimer’s disease and related dementias. The qualitative study explored caregiving experiences and potential cultural influences among Asian Indian, Chinese, Korean, and Vietnamese family care partners of persons living with dementia. Methods We conducted focus groups and individual interviews with 32 care partners from these four Asian subgroups using Zoom, WeChat, or telephone. Results Four themes emerged from the data: (1) Family obligations influencing caregiving decisions; (2) Evolving challenges related to dementia caregiving; (3) Caregiving burdens/negative impacts from caregiving (relationship burdens and emotional distress); and (4) Coping with their situation in their own ways (cognitive, behavioral, and social strategies).Conclusion: Cultural values (e.g. familism or filial piety) played a significant role in caregiving decisions and experiences. There was a need to raise public awareness of dementia and create culturally and linguistically appropriate training programs for this population.