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1.
Int J Geriatr Psychiatry ; 39(7): e6115, 2024 Jul.
Article En | MEDLINE | ID: mdl-38923024

OBJECTIVES: With increasing life expectancy and rapid ageing, there is an expanding number of older people who have functional declines, greater needs for care and support and who are at increased risk of insufficient social interaction. Longitudinal investigations on the interplay between loneliness, social isolation and care dependence remain limited. This study thus aimed to investigate the longitudinal reciprocal association between social isolation/loneliness and care dependence among older adults in Latin America and China. METHODS: We analysed data from the population-based cohorts from the 10/66 Dementia Research Group (DRG) project (baseline 2003-07 and follow-up 2007-2010). The 10/66 DRG study recruited and followed up older adults aged 65 years or above in 11 catchment areas in Latin America and China. A total of 15,027 older adults from Latin America and China (mean age = 73.5, standard deviation = 6.5) were included in our analyses. Cross-lagged panel models were used to investigate potential reciprocal associations. RESULTS: Loneliness was positively associated with care dependence at baseline (ß = 0.11, p < 0.001 in Latin America; ß = 0.16, p < 0.05 in China]. Social isolation consistently had a stronger positive association with care dependence across all study sites in both waves. Longitudinally, care dependence positively predicted loneliness (ß = 0.10, p < 0.001) and social isolation (ß = 0.05, p < 0.001) in Latin American study sites but not in China. Yet there was no statistical evidence of lagged effects of loneliness and social isolation on care dependence in all study countries. CONCLUSIONS: Older people with care dependence are at risk of developing loneliness and social isolation. It is crucial to develop complex care models using a societal approach to address social and care needs holistically, especially for the older group with declining functional capacity. Future longitudinal research is required to explore the causal mechanisms of relationships and cultural differences, in order to inform the development of culturally appropriate care models.


Loneliness , Social Isolation , Humans , Loneliness/psychology , Aged , Social Isolation/psychology , Male , Female , China , Latin America , Aged, 80 and over , Longitudinal Studies , Dementia/psychology , Cohort Studies
2.
BMC Med ; 22(1): 265, 2024 Jun 24.
Article En | MEDLINE | ID: mdl-38915081

BACKGROUND: People with different types of dementia may have distinct symptoms and experiences that affect their quality of life. This study investigated whether quality of life varied across types of dementia and over time. METHODS: The participants were 1555 people with mild-to-moderate dementia and 1327 carers from the IDEAL longitudinal cohort study, recruited from clinical services. As many as possible were followed for up to 6 years. Diagnoses included were Alzheimer's disease, vascular dementia, mixed Alzheimer's and vascular dementia, Parkinson's disease dementia, dementia with Lewy bodies, and frontotemporal dementia. Self- and informant-rated versions of the Quality of Life in Alzheimer's Disease scale were used. A joint model, incorporating a mixed effects model with random effects and a survival model to account for dropout, was used to examine whether quality of life varied by dementia type at the time of diagnosis and how trajectories changed over time. RESULTS: The strongest associations between dementia type and quality of life were seen around the time of diagnosis. For both self-ratings and informant ratings, people with Parkinson's disease dementia or dementia with Lewy bodies had lower quality of life scores. Over time there was little change in self-rated scores across all dementia types (- 0.15 points per year). Informant-rated scores declined over time (- 1.63 points per year), with the greatest decline seen in ratings by informants for people with dementia with Lewy bodies (- 2.18 points per year). CONCLUSIONS: Self-rated quality of life scores were relatively stable over time whilst informant ratings showed a steeper decline. People with Parkinson's disease dementia or dementia with Lewy bodies report particularly low levels of quality of life, indicating the importance of greater attention to the needs of these groups.


Dementia , Quality of Life , Humans , Quality of Life/psychology , Male , Female , Longitudinal Studies , Aged , Dementia/psychology , Aged, 80 and over , Middle Aged
3.
BMC Geriatr ; 24(1): 480, 2024 Jun 01.
Article En | MEDLINE | ID: mdl-38824515

OBJECTIVE: Research the dose-response relationship between overall and certain types of exercise and cognitive function in older adults with Alzheimer's disease and dementia. DESIGN: Systemic and Bayesian Model-Based Network Meta-Analysis. METHODS: In our study, we analyzed data from randomized controlled trials investigating the effects of different exercises on cognitive outcomes in older adults with AD. We searched the Web of Science, PubMed, Cochrane Central Register of Controlled Trials, and Embase up to November 2023. Using the Cochrane Risk of Bias tool (Rob2) for quality assessment and R software with the MBNMA package for data analysis, we determined standard mean differences (SMDs) and 95% confidence intervals (95%CrI) to evaluate exercise's impact on cognitive function in AD. RESULTS: Twenty-seven studies with 2,242 AD patients revealed a nonlinear relationship between exercise and cognitive improvement in AD patients. We observed significant cognitive enhancements at an effective exercise dose of up to 1000 METs-min/week (SMDs: 0.535, SD: 0.269, 95% CrI: 0.023 to 1.092). The optimal dose was found to be 650 METs-min/week (SMDs: 0.691, SD: 0.169, 95% CrI: 0.373 to 1.039), with AE (Aerobic exercise) being particularly effective. For AE, the optimal cognitive enhancement dose was determined to be 660 METs-min/week (SMDs: 0.909, SD: 0.219, 95% CrI: 0.495 to 1.362). CONCLUSION: Nonlinear dose-response relationship between exercise and cognitive improvement in Alzheimer's disease, with the optimal AE dose identified at 660 METs-min/week for enhancing cognitive function in AD.


Alzheimer Disease , Bayes Theorem , Cognition , Network Meta-Analysis , Randomized Controlled Trials as Topic , Humans , Alzheimer Disease/psychology , Alzheimer Disease/therapy , Randomized Controlled Trials as Topic/methods , Cognition/physiology , Exercise Therapy/methods , Dementia/psychology , Dementia/therapy , Aged
4.
J Aging Stud ; 69: 101224, 2024 Jun.
Article En | MEDLINE | ID: mdl-38834244

Discussions regarding personhood and dementia care are often based on practices of recognition; on notions of being-or not being- 'one of us'. This article provides a short overview of personhood as articulated in dementia care, especially in the assemblage of practices known as 'person-centred care' (PCC), and in post-human approaches that developed following the critique of PCC. This article posits an alternative framework, based on a rereading of the concept of alienation, that we want to call 'alienation-centred care'. It considers the extent to which dynamic prosthetic networks can be adapted to the lives of people with dementia, rather than only examining the individual's reactivity to dementia interventions that define traditional approaches. It further urges us to understand the multiple origins of alienating states. Conclusions explore how this framework might address some of the limitations identified in both humanist and post-human approaches to personhood and dementia.


Dementia , Patient-Centered Care , Personhood , Humans , Dementia/psychology , Dementia/therapy
5.
J Aging Stud ; 69: 101233, 2024 Jun.
Article En | MEDLINE | ID: mdl-38834248

Many adults face the difficulties of a parent living with dementia. Although not always caregiving for a parent living with dementia, they care about and are concerned for the vulnerability of their parent. This concern is invaluable but often an experience with a far-reaching impact. Qualitative research on filial concerns and experiences of caregiving has resulted in a vast body of knowledge about the experience of family carers. Far less research, however, has examined the moral concern of children. The aim of this study is to gain insight into the normative aspects of their concern. An international collection of 24 books written by adult children about their involvement with an ageing parent was analysed using the Dialogical Narrative Analysis method. Our study shows that the stories deal with children's moral questions about independence, identity, and suffering. These questions can be related to social imaginaries of individualism and progress. The two social imaginaries may have both positive and negative impacts on children's ability to cope with their concern for a parent living with dementia. The moral questions that arise from children's concern seem to originate from both the appeal of the vulnerable parent and from the social imaginaries. These moral sources may compete, resulting in moral friction. Children with a parent living with dementia deliberate upon the personal and societal held beliefs and need moral space to embody their concern.


Adult Children , Caregivers , Dementia , Morals , Narration , Humans , Dementia/psychology , Female , Male , Caregivers/psychology , Adult Children/psychology , Parent-Child Relations , Parents/psychology , Aged , Adult , Qualitative Research , Middle Aged , Adaptation, Psychological
6.
Front Public Health ; 12: 1366143, 2024.
Article En | MEDLINE | ID: mdl-38873291

Background: Affiliate stigma experienced by family caregivers of individuals with dementia may seriously affect home care and prognosis of these patients. This study aimed to explore the levels of perceived affiliate stigma and its influencing factors among family caregivers of patients with dementia in mainland China, which remains a relatively unexplored topic. Methods: In this cross-sectional study, purposive sampling was used to recruit dementia family caregivers from an online communication group between April and May 2022. A total of 727 eligible caregivers were included and asked to complete the demographic questionnaire, the affiliate stigma scale, and the caregiver burden inventory. Descriptive statistics, independent sample t-test, one-way analysis of variance, Pearson correlation analysis, and multiple linear regression were used to explore the factors that influence perceived affiliate stigma among dementia family caregivers. Results: The mean score for affiliate stigma of dementia family caregivers was 48.09 ± 16.38 (range: 22-86). Whether there were regular breaks during patient care, time-dependent burden, developmental burden, physical burden, and social burden were significant factors influencing the affiliate stigma of dementia family caregivers. Conclusion: Dementia family caregivers showed a moderate to high level of affiliate stigma. Those who had regular breaks during patient care, higher time-dependent burden, developmental burden, and physical burden and lower social burden exhibited higher levels of affiliate stigma.


Caregivers , Dementia , Social Stigma , Humans , Cross-Sectional Studies , Caregivers/psychology , Caregivers/statistics & numerical data , Dementia/nursing , Dementia/psychology , China , Male , Female , Middle Aged , Surveys and Questionnaires , Aged , Adult , Aged, 80 and over
7.
Trials ; 25(1): 369, 2024 Jun 08.
Article En | MEDLINE | ID: mdl-38851719

BACKGROUND: Nearly two-thirds of family caregivers of persons living with Alzheimer's disease or related dementias (AD/ADRD) provide complex care, including medical care. Family caregivers typically receive little to no training on how to provide this care. Furthermore, family caregivers simultaneously grapple with the presence of behavioral and psychological symptoms of dementia (BPSD), diminished communication abilities, and comorbidities such as diabetes. We developed Learning Skills Together (LST), a 6-week digitally delivered psychoeducational program, to facilitate family caregiver abilities to administer complex care tasks. The goal of the present study is to test the efficacy of LST and to reduce adverse outcomes associated with caregiving, such as depressive symptomology and negative appraisal of BPSD. METHODS: To test the efficacy of LST, we will conduct a two-arm single-site randomized controlled trial (RCT) with N = 200 family caregivers of persons living with AD/ADRD. Eligible family caregivers will be randomly assigned to participate in either the LST intervention or a structurally equivalent control condition focused on healthy living. All family caregivers will complete four surveys, including a baseline survey administered prior to randomization, a post-intervention survey, and a 3- and 6-month follow-up survey to assess change in study outcomes. Between-group comparisons of each outcome will be evaluated using generalized estimating equation models. Mediation analyses will assess family caregiver self-efficacy as the intervention's mechanism of change in depressive symptomology and BPSD. We will also examine caregiver race, ethnicity, and gender as effect modifiers of the intervention. DISCUSSION: LST findings will inform the field of AD/ADRD and caregiving regarding optimally supporting family caregivers in managing complex care tasks. If efficacious, the LST intervention will support family caregivers in preserving their own mental health while providing complex care. TRIAL REGISTRATION: Clinical Trials.gov NCT05846984 . This study was registered on May 6, 2023.


Caregivers , Dementia , Self Efficacy , Humans , Caregivers/psychology , Caregivers/education , Dementia/psychology , Dementia/nursing , Randomized Controlled Trials as Topic , Learning , Depression/psychology , Depression/therapy , Alzheimer Disease/psychology , Alzheimer Disease/therapy , Alzheimer Disease/nursing , Female , Male
8.
PLoS One ; 19(6): e0305266, 2024.
Article En | MEDLINE | ID: mdl-38870211

Older people living with dementia or mild cognitive impairment (MCI) are more vulnerable to experiencing social isolation and loneliness due to their cognitive and physical impairments. Increasingly integrating technology into group exercises contributed to the improved resilience and well-being of older adults living with dementia and MCI. The purpose of this scoping review was to identify the various types, feasibility, outcome measures, and impacts of technology-based group exercise interventions for people with dementia or MCI. We utilized the Joanna Briggs Institute approach, a three-step process. A comprehensive literature search on five databases-CINAHL, MEDLINE, Embase, Web of Science, and PsycInfo-until January 2024 yielded 1,585 publications; the final review included 14 publications that recruited a total of 379 participants, with mean age of 69 (SD = 4.21) years to 87.07 (SD = 3.92) years. Analysis of data showed three types of technology-based group exercise interventions for people with dementia or MCI: (a) exergames, (b) virtual cycling or kayak paddling, and (c) video-conferencing platforms. In addition, we identified three key impacts: (a) feasibility and accessibility; (b) physical, psychosocial, and cognitive benefits; and (c) adaptations necessary for persons with dementia or MCI. Our study suggests that technology-based group exercise interventions are feasible and acceptable to persons with dementia or MCI. Future studies should involve individuals with dementia and their caregivers in the design and implementation of technology-based group exercise programs.


Cognitive Dysfunction , Dementia , Exercise Therapy , Humans , Cognitive Dysfunction/therapy , Cognitive Dysfunction/psychology , Dementia/psychology , Dementia/therapy , Exercise Therapy/methods , Aged , Aged, 80 and over , Exercise , Quality of Life , Female
9.
JMIR Res Protoc ; 13: e55216, 2024 Jun 13.
Article En | MEDLINE | ID: mdl-38869929

BACKGROUND: The Hispanic and Latinx community is disproportionately affected by Alzheimer disease and related dementias (ADRDs). In the United States, approximately 8.5 million caregivers of individuals with ADRDs identify as Hispanic and Latinx people, and caregiving-related stress and burden place caregivers at elevated risk for poor mental health outcomes, as well as loneliness and social isolation. To date, there is limited knowledge about the daily stress experiences of Hispanic and Latinx caregivers. Given this knowledge gap, it is critical to examine how personal, cultural, and contextual factors influence daily stress, mental health, and resilience over time among Hispanic and Latinx ADRD caregivers. OBJECTIVE: The goal of this protocol report is to present the rationale, methodology, planned analytical strategy, progress completed to date, and implications of future findings for "Nuestros Días" (Spanish for "our days"), a fully remote daily diary (DD), observational cohort study examining the day-to-day experiences of Hispanic and Latinx ADRD caregivers. METHODS: The study will recruit a cohort of up to 500 Hispanic and Latinx caregivers of individuals living with ADRD. Participants will complete measures assessing contextual, individual-level, and cultural factors at 3 intervals (enrollment, 6 months, and 12 months). Each of the timepoints will be followed by 21 days of DD surveys to report on daily stress, stress moderators, and mental health variables. RESULTS: Data collection began in March 2023 and is projected to end in December 2026. As of March 2024, we have enrolled 60 caregivers in the Nuestros Días study, 78.9% (n=15) of whom are Spanish speakers. The current completion rate for DD surveys is 79.4%, averaging approximately 18 surveys out of 21 completed. We expect to enroll 10 to 15 participants per month moving forward to achieve our enrollment goal. CONCLUSIONS: Results from this study will identify which Hispanic and Latinx ADRD caregivers, and under what circumstances, appear to be at the greatest risk of experiencing poor mental health outcomes over time. This study represents a critical step forward in providing key guidance to develop effective, culturally sensitive interventions to support the health and well-being of Hispanic and Latinx ADRD caregivers, a historically underrepresented and underserved population in aging and caregiving research. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/55216.


Caregivers , Dementia , Hispanic or Latino , Humans , Hispanic or Latino/psychology , Caregivers/psychology , Cohort Studies , Dementia/psychology , Dementia/ethnology , Female , Male , Stress, Psychological/psychology , Middle Aged , Aged , United States/epidemiology , Adult , Diaries as Topic
10.
BMC Geriatr ; 24(1): 504, 2024 Jun 07.
Article En | MEDLINE | ID: mdl-38849735

BACKGROUND: People living with, or caring for someone with, rare forms of dementia can encounter issues while obtaining a diagnosis and trying to access appropriate support. This can affect their wellbeing, quality of life, social relationships and employment status. This study makes use of an arts-based narrative approach to explore individual accounts of these experiences whilst also exploring how, in telling their stories, those affected by rare forms of dementia might invoke, and situate their stories in relation to, broader cultural narratives around dementia and illness. METHODS: Semi-structured interviews were conducted via video-conferencing software with participants (N = 27), living with, or caring for someone with, a rare forms of dementia. Participants used line drawings to depict their journey from initial symptoms to the present day, followed by prompts to verbally narrate their experiences. All interview transcripts and line drawings were subjected to narrative analysis. Four sets of transcripts and drawings were then subjected to more in-depth analysis. RESULTS: Analysis shed light on the struggles encountered by both care-partners and people with a diagnosis, while navigating a health and social care system that does not always understand their needs. This often led to individuals feeling isolated and unsupported. Accounts also depicted challenges to identity brought on by the process. The moment of diagnosis was also drawn in a complicated light. Individuals found comfort in gaining understanding, but felt fear at recognising upcoming challenges. Participants situated their own accounts against mainstream cultural narratives around what good support for cognitive impairment and dementia might look like, whilst also demonstrating the influential role they took on in pursuing the right care. CONCLUSIONS: The use of line drawing, alongside narrative interviews, allowed participants to tell complicated, sometimes anachronistic, stories about difficult experiences, whilst also reflecting on, and attaching meaning to, them. These stories highlighted pressing gaps in healthcare services and shone a light on the various pieces of collective action individuals were engaged in in order to improve them. Finally, in modelling some elements of the participants' service provision which were working, the narratives pointed to future directions services might move in.


Dementia , Narration , Humans , Dementia/diagnosis , Dementia/psychology , Female , Male , Aged , Middle Aged , Aged, 80 and over , Social Support , Caregivers/psychology , Interviews as Topic
11.
Alzheimers Res Ther ; 16(1): 122, 2024 Jun 07.
Article En | MEDLINE | ID: mdl-38849944

BACKGROUND: Evidence links lifestyle factors with Alzheimer's disease (AD). We report the first randomized, controlled clinical trial to determine if intensive lifestyle changes may beneficially affect the progression of mild cognitive impairment (MCI) or early dementia due to AD. METHODS: A 1:1 multicenter randomized controlled phase 2 trial, ages 45-90 with MCI or early dementia due to AD and a Montreal Cognitive Assessment (MoCA) score of 18 or higher. The primary outcome measures were changes in cognition and function tests: Clinical Global Impression of Change (CGIC), Alzheimer's Disease Assessment Scale (ADAS-Cog), Clinical Dementia Rating-Sum of Boxes (CDR-SB), and Clinical Dementia Rating Global (CDR-G) after 20 weeks of an intensive multidomain lifestyle intervention compared to a wait-list usual care control group. ADAS-Cog, CDR-SB, and CDR-Global scales were compared using a Mann-Whitney-Wilcoxon rank-sum test, and CGIC was compared using Fisher's exact test. Secondary outcomes included plasma Aß42/40 ratio, other biomarkers, and correlating lifestyle with the degree of change in these measures. RESULTS: Fifty-one AD patients enrolled, mean age 73.5. No significant differences in any measures at baseline. Only two patients withdrew. All patients had plasma Aß42/40 ratios <0.0672 at baseline, strongly supporting AD diagnosis. After 20 weeks, significant between-group differences in the CGIC (p= 0.001), CDR-SB (p= 0.032), and CDR Global (p= 0.037) tests and borderline significance in the ADAS-Cog test (p= 0.053). CGIC, CDR Global, and ADAS-Cog showed improvement in cognition and function and CDR-SB showed significantly less progression, compared to the control group which worsened in all four measures. Aß42/40 ratio increased in the intervention group and decreased in the control group (p = 0.003). There was a significant correlation between lifestyle and both cognitive function and the plasma Aß42/40 ratio. The microbiome improved only in the intervention group (p <0.0001). CONCLUSIONS: Comprehensive lifestyle changes may significantly improve cognition and function after 20 weeks in many patients with MCI or early dementia due to AD. TRIAL REGISTRATION: Approved by Western Institutional Review Board on 12/31/2017 (#20172897) and by Institutional Review Boards of all sites. This study was registered retrospectively with clinicaltrials.gov on October 8, 2020 (NCT04606420, ID: 20172897).


Alzheimer Disease , Cognitive Dysfunction , Disease Progression , Life Style , Humans , Male , Female , Aged , Alzheimer Disease/psychology , Aged, 80 and over , Middle Aged , Dementia/psychology , Amyloid beta-Peptides/blood , Neuropsychological Tests , Treatment Outcome
12.
BMC Psychol ; 12(1): 361, 2024 Jun 20.
Article En | MEDLINE | ID: mdl-38902797

BACKGROUND: Dementia is an important public health and geriatric concern for sub-Saharan African countries, including Ghana. Evidence shows that persons living with dementia are often supported and cared for by family caregivers in the community. In the execution of these services to the persons living with dementia, family caregivers are overwhelmed and experience heightened stress that results in serious repercussions. Therefore, the aim of this study was to explore family caregivers' experiences on coping in dementia care in Ghana. METHODS: Adopting a descriptive phenomenological design, individual face-to-face interviews were conducted among thirty unpaid family caregivers of persons living with dementia in Ghana. Semi-structured interview guides were used. The data analysis process followed Clarke and Braun's framework analysis. RESULTS: Six themes were generated from the textual data. These themes were captioned as: (1) empathy and perspective-taking; (2) family support and cohesion; (3) coaxing and pampering of persons living with dementia; (4) humour and positive communication; (5) spiritual support; and (6) ethical/moral consideration in dementia caregiving. CONCLUSION: We conclude that unpaid family caregivers of persons living with dementia in Ghana adopt varied strategies to cope with the strains of caregiving. Healthcare facilities that provide services to persons living with dementia could incorporate caregiver preparatory training or education for family caregivers. This training should focus on briefing family caregivers about the potential strains that they are likely to encounter. Also, the training could focus on equipping family caregivers with the knowledge and skills to effectively communicate and care for the persons living with dementia using person-centered approaches. Key stakeholders such as the Ghana Health Service and Alzheimer's Ghana must raise awareness about the dangers of caregivers' violation of the autonomy and freedom of persons living with dementia as they navigate through the challenges of caregiving. Lastly, faith-based institutions need to be considered as key stakeholders in dementia interventions since they could play a critical role.


Adaptation, Psychological , Caregivers , Dementia , Humans , Caregivers/psychology , Ghana , Dementia/nursing , Dementia/psychology , Male , Female , Middle Aged , Aged , Adult , Qualitative Research , Family/psychology , Aged, 80 and over
13.
Medicine (Baltimore) ; 103(25): e38605, 2024 Jun 21.
Article En | MEDLINE | ID: mdl-38905432

The purpose of this study was to assess the relationship between quality of life and dementia caregivers. The 2019 Korean Community Health Survey participants were assessed using the Patient Health Questionnaire-9, subjective cognitive decline (SCD) and SCD-related functional limitation, and EuroQol 5-dimension (EQ-5D). Sociodemographic and psychosocial variables were evaluated and compared between participants with dementia caregivers (n = 37,614) and non-dementia caregivers (n = 140,518). The dementia caregivers group reported significantly higher rates of depression, SCD, SCD-related functional restriction, and mean EQ-5D compared to the non-dementia caregivers group (P < .001). After adjusting for multiple confoundings, the odds ratio (OR) for depression (Patient Health Questionnaire-9 ≥ 10), SCD, SCD-related functional limitation, and lowest quartile of the EQ-5D index scores in the dementia caregivers group were 1.43 (95% confidence interval [CI], 1.29-1.59), 1.30 (95% CI: 1.24-1.36), 1.26 (95% CI: 1.20-1.32), and 1.22 (95% CI: 1.16-1.29), respectively. Physical activity (OR: 1.47; 95% CI: 1.43-1.52), self-control (OR: 1.41; 95% CI: 1.35-1.47), daily activity (OR: 1.55; 95% CI: 1.50-1.60), pain (OR: 1.62; 95% CI: 1.58-1.67), and anxiety/depression (OR: 2.17; 95% CI: 2.10-2.24) were all more common among participants in the dementia caregivers group than in the non-dementia family caregivers group. Depression, SCD, and a lower quality of life are linked to dementia caregivers, especially if there is moderate to severe anxiety or depression.


Caregivers , Dementia , Depression , Quality of Life , Humans , Quality of Life/psychology , Republic of Korea/epidemiology , Caregivers/psychology , Male , Female , Dementia/psychology , Middle Aged , Aged , Depression/epidemiology , Depression/psychology , Cross-Sectional Studies , Adult
14.
Int J Older People Nurs ; 19(4): e12624, 2024 Jul.
Article En | MEDLINE | ID: mdl-38895917

BACKGROUND: The population of people with dementia increases yearly, imposing a growing burden on family caregivers. Psychological distress impacts the mental health of family caregivers of people with dementia. Caregiver psychological distress can result in increased social resource utilisation and unmet multicare needs. PURPOSE: The study explored the psychological distress of family caregivers of people with dementia and examined the impact on social resource utilisation and multicare needs. METHODS: A descriptive-correlational study collected data in Taiwan from a cross-sectional sample of family caregivers of people with dementia using a self-report questionnaire. Data were analysed using linear and logistic regression. RESULTS: A total of 301 caregivers provided data for analysis. Nearly two-thirds of caregivers were female with a mean age of 57 years old (SD = 12). Over half of the family caregivers of people with dementia experienced mild-to-moderate psychological distress. The greater the psychological distress, the greater the probability of using social resources (1.09 times per 1-point increase, p = 0.002). Psychological distress was positively associated with the number of caregivers' care needs (ß = 0.371, p < 0.001). CONCLUSIONS: Findings of this study can assist healthcare professionals in better understanding the psychological distress and care needs of caregivers. Services designed to meet the needs of family caregivers will improve psychological distress.


Caregivers , Dementia , Psychological Distress , Humans , Female , Caregivers/psychology , Male , Dementia/nursing , Dementia/psychology , Middle Aged , Cross-Sectional Studies , Taiwan , Aged , Surveys and Questionnaires , Adult , Social Support , Stress, Psychological
15.
BMC Psychiatry ; 24(1): 452, 2024 Jun 18.
Article En | MEDLINE | ID: mdl-38890607

BACKGROUND: Getting lost with family members who have dementia is a significant source of stress for family caregivers. In Taiwan, family caregivers develop strategies to deal with dementia persons who may get lost. This study aimed to explore the experiences of family caregivers caring for persons with dementia who have been lost outside the home. METHODS: A descriptive phenomenological method was used. The COREQ checklist was used to ensure the explicit reporting of data. A total of 20 family caregivers caring for persons with dementia who were lost outside their homes were selected from hospital outpatient clinics and a day care center in northern Taiwan using purposive sampling. Data were analyzed using the Giorgi analysis method. RESULTS: Five main themes emerged: (i) surprised persons with dementia lost outside, (ii) using strategies to prevent persons with dementia from getting lost, (iii) using strategies to find lost persons with dementia, (iv) exhaustion in long-term care persons with dementia, and (v) coping with the care load. It was found that family caregivers were surprised, nervous, and worried about persons with dementia being lost outside. They used the first strategy to supervise persons with dementia to prevent external losses. In addition, long-term supervision of persons with dementia led to mental exhaustion in the family caregivers. Finally, the family caregivers learned about loss prevention strategies and obtained family support and care replacement workers to reduce the care burden. CONCLUSIONS: It is essential to teach family caregivers early to prevent persons with dementia from losing external strategies. Nurses also provide long-term care services to reduce the care burden on family caregivers.


Adaptation, Psychological , Caregivers , Dementia , Qualitative Research , Humans , Caregivers/psychology , Dementia/nursing , Dementia/psychology , Male , Female , Middle Aged , Aged , Taiwan , Family/psychology , Adult , Stress, Psychological/psychology , Aged, 80 and over
16.
BMC Geriatr ; 24(1): 493, 2024 Jun 05.
Article En | MEDLINE | ID: mdl-38840041

BACKGROUND: Early detection of dementia and cognitive decline is crucial for effective interventions and overall wellbeing. Although virtual reality (VR) tools offer potential advantages to traditional dementia screening tools, there is a lack of knowledge regarding older adults' acceptance of VR tools, as well as the predictors and features influencing their adoption. This study aims to (i) explore older adults' perceptions of the acceptability and usefulness of VR diagnostic tools for dementia, and (ii) identify demographic predictors of adoption and features of VR applications that contribute to future adoption among older adults. METHODS: A cross-sectional study was conducted involving community-dwelling older adults who completed online questionnaires covering demographics, medical history, technology acceptance, previous usage, and perceived usefulness and barriers to VR adoption. Multiple linear regression was employed to assess relationships between sociodemographic factors, prior technology use, perceived ease, usefulness, and intention to adopt VR-based diagnostic tools. RESULTS: Older adults (N = 77, Mage = 73.74, SD = 6.4) were predominantly female and born in English-speaking countries. Perceived usefulness of VR applications and educational attainment emerged as significant predictors of the likelihood to use VR applications for dementia screening. Generally, older adults showed acceptance of VR applications for healthcare and dementia screening. Fully immersive applications were preferred, and older adults were mostly willing to share electronic information from screening with their healthcare providers. CONCLUSIONS: The field of research on VR applications in healthcare is expanding. Understanding the demographic characteristics of populations that stand to benefit from healthcare innovations is critical for promoting adoption of digital health technologies and mitigating its barriers to access.


Dementia , Patient Acceptance of Health Care , Virtual Reality , Humans , Female , Male , Aged , Dementia/diagnosis , Dementia/psychology , Dementia/epidemiology , Cross-Sectional Studies , Patient Acceptance of Health Care/psychology , Aged, 80 and over , Surveys and Questionnaires , Mass Screening/methods , Independent Living
17.
BMC Geriatr ; 24(1): 519, 2024 Jun 14.
Article En | MEDLINE | ID: mdl-38877412

BACKGROUND: The majority of persons with dementia in Sweden reside in their own homes with support from family members. Approximately, 12% of persons with dementia have immigrant background. Within the next 20 years, the number of persons with dementia who are non-ethnic Swedes is said to double. Family caregivers with immigrant backgrounds are noted to receive less support in the community than ethnic Swedes and rate their health status lower than ethnic Swedish peers. The Swedish National Board of Health and Welfare have highlighted the importance of follow-up support for family caregivers with immigrant backgrounds as there is a recognized gap in research and available information tailored to meet the needs of this group. PURPOSE OF THE STUDY: The purpose of the study is to test effectiveness of an mHealth based intervention through which community social workers can improve caregiving competence of non-European immigrant family caregivers of people with dementia living at home in Sweden. The overarching aim is to reduce caregiver burden and depressive symptoms, and improve quality of life. METHODS: A randomized controlled trial (RCT) including wait list control group will be performed consisting of an intervention group (A, n = 44) and a wait list control group (B, n = 44), totaling a sample size of 88. On completion of the 10-weeks long intervention in the intervention group, the intervention will be delivered to group B. Effect of the intervention will be analyzed between and within groups over time. The content of the educational component of the intervention is inspired by the iSupport manual developed by the World Health Organization. The contents, in the form of a booklet, aims to equip the family caregivers with structured information on understanding dementia as a condition and its management at home, including self-care guidance designed specifically for family caregivers themselves. DISCUSSION: Similar telephone-delivered intervention studies targeted for family caregivers to persons with dementia are ongoing in Malaysia and will start in India using the same booklet adapted to the local context. These studies will provide evidence on the effectiveness of using digital technologies to deliver support to those who may not be reached or adequately served by the traditional healthcare system. TRIAL REGISTRATION: ISRCTN registry, Registration number ISRCTN64235563.


Caregivers , Dementia , Telemedicine , Humans , Caregivers/psychology , Sweden , Dementia/therapy , Dementia/psychology , Emigrants and Immigrants/psychology , Quality of Life/psychology , Female , Male , Social Workers/psychology , Aged
18.
JMIR Aging ; 7: e55169, 2024 May 31.
Article En | MEDLINE | ID: mdl-38825836

Background: Informal dementia caregivers are those who care for a person living with dementia and do not receive payment (eg, family members, friends, or other unpaid caregivers). These informal caregivers are subject to substantial mental, physical, and financial burdens. Online communities enable these caregivers to exchange caregiving strategies and communicate experiences with other caregivers whom they generally do not know in real life. Research has demonstrated the benefits of peer support in online communities, but this research is limited, focusing merely on caregivers who are already online community users. Objective: We aimed to investigate the perceptions and utilization of online peer support through a survey. Methods: Following the Andersen and Newman Framework of Health Services Utilization and using REDCap (Research Electronic Data Capture), we designed and administered a survey to investigate the perceptions and utilization of online peer support among informal dementia caregivers. Specifically, we collected types of information that influence whether an informal dementia caregiver accesses online peer support: predisposing factors, which refer to the sociocultural characteristics of caregivers, relationships between caregivers and people living with dementia, and belief in the value of online peer support; enabling factors, which refer to the logistic aspects of accessing online peer support (eg, eHealth literacy and access to high-speed internet); and need factors, which are the most immediate causes of seeking online peer support. We also collected data on caregivers' experiences with accessing online communities. We distributed the survey link on November 14, 2022, within two online locations: the Alzheimer's Association website (as an advertisement) and ALZConnected (an online community organized by the Alzheimer's Association). We collected all responses on February 23, 2023, and conducted a regression analysis to identifyn factors that were associated with accessing online peer support. Results: We collected responses from 172 dementia caregivers. Of these participants, 140 (81.4%) completed the entire survey. These caregivers were aged 19 to 87 (mean 54, SD 13.5) years, and a majority were female (123/140, 87.9%) and White (126/140, 90%). Our findings show that the behavior of accessing any online community was significantly associated with participants' belief in the value of online peer support (P=.006). Moreover, of the 40 non-online community caregivers, 33 (83%) had a belief score above 24-the score that was assigned when a neutral option was selected for each belief question. The most common reasons for not accessing any online community were having no time to do so (14/140, 10%) and having insufficient online information-searching skills (9/140, 6.4%). Conclusions: Our findings suggest that online peer support is valuable, but practical strategies are needed to assist informal dementia caregivers who have limited time or online information-searching skills.


Caregivers , Dementia , Peer Group , Social Support , Humans , Caregivers/psychology , Female , Dementia/nursing , Dementia/psychology , Male , Surveys and Questionnaires , Middle Aged , Aged , Internet , Adult
19.
JMIR Aging ; 7: e50107, 2024 Jun 07.
Article En | MEDLINE | ID: mdl-38848116

BACKGROUND: Assistive technologies can help people living with dementia maintain their everyday activities. Nevertheless, there is a gap between the potential and use of these materials. Involving future users may help close this gap, but the impact on people with dementia is unclear. OBJECTIVE: We aimed to determine if user-centered development of smartwatch-based interventions together with people with dementia is feasible. In addition, we evaluated the extent to which user feedback is plausible and therefore helpful for technological improvements. METHODS: We examined the interactions between smartwatches and people with dementia or people with mild cognitive impairment. All participants were prompted to complete 2 tasks (drinking water and a specific cognitive task). Prompts were triggered using a smartphone as a remote control and were repeated up to 3 times if participants failed to complete a task. Overall, 50% (20/40) of the participants received regular prompts, and 50% (20/40) received intensive audiovisual prompts to perform everyday tasks. Participants' reactions were observed remotely via cameras. User feedback was captured via questionnaires, which included topics like usability, design, usefulness, and concerns. The internal consistency of the subscales was calculated. Plausibility was also checked using qualitative approaches. RESULTS: Participants noted their preferences for particular functions and improvements. Patients struggled with rating using the Likert scale; therefore, we assisted them with completing the questionnaire. Usability (mean 78 out of 100, SD 15.22) and usefulness (mean 9 out of 12) were rated high. The smartwatch design was appealing to most participants (31/40, 76%). Only a few participants (6/40, 15%) were concerned about using the watch. Better usability was associated with better cognition. The observed success and self-rated task comprehension were in agreement for most participants (32/40, 80%). In different qualitative analyses, participants' responses were, in most cases, plausible. Only 8% (3/40) of the participants were completely unaware of their irregular task performance. CONCLUSIONS: People with dementia can have positive experiences with smartwatches. Most people with dementia provided valuable information. Developing assistive technologies together with people with dementia can help to prioritize the future development of functional and nonfunctional features.


Dementia , Self-Help Devices , Smartphone , User-Centered Design , Humans , Dementia/psychology , Dementia/therapy , Dementia/rehabilitation , Male , Female , Aged , Aged, 80 and over , Surveys and Questionnaires , Activities of Daily Living/psychology , Cognitive Dysfunction/psychology , Cognitive Dysfunction/rehabilitation , Cognitive Dysfunction/therapy , Middle Aged , Mobile Applications
20.
Alzheimers Res Ther ; 16(1): 133, 2024 Jun 22.
Article En | MEDLINE | ID: mdl-38909256

BACKGROUND: Aim of this study was to detect predictors of better adherence to the AgeWell.de-intervention, a two-year randomized multi-domain lifestyle intervention against cognitive decline. METHODS: Data of 317 intervention group-participants comprising a risk group for dementia (Cardiovascular Risk Factors, Ageing and Dementia (CAIDE) score of ≥ 9; mean age 68.9 years, 49.5% women) from the AgeWell.de intervention study were analysed. Regression models with four blocks of predictors (sociodemographic, cognitive and psychosocial, lifestyle factors and chronic conditions) were run on adherence to the components of nutrition, enhancement of social and physical activity and cognitive training. Adherence to each component was operationalised by assessing the degree of goal achievement per component at up to seven time points during the intervention period, measured using a 5-point Likert scale (mean score of goal achievement). RESULTS: Increasing age was negatively associated with adherence, while higher education positively predicted adherence. Participants with better mental state (Montreal Cognitive Assessment (MoCA)-score > 25) at baseline and higher self-efficacy adhered better. Diabetes and cardiovascular conditions were not associated with adherence, whereas smoking negatively affected adherence. Highest education and quitting smoking in the past were the only predictors associated with all four intervention components. CONCLUSION: Results identified predictors for better and worse adherence. Particularly self-efficacy seems to be of considerable influence on adherence. This should be considered when designing future intervention trials. TRIAL REGISTRATION: German Clinical Trials Register (ref. number: DRKS00013555).


Cognitive Dysfunction , Life Style , Self Efficacy , Humans , Female , Male , Aged , Cognitive Dysfunction/prevention & control , Cognitive Dysfunction/psychology , Patient Compliance/psychology , Middle Aged , Exercise/psychology , Dementia/psychology , Dementia/prevention & control , Dementia/epidemiology , Aged, 80 and over
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