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Grief research in family carers of people with dementia has increased. We aimed to report the prevalence of pre-death and post-death grief and to synthesize associated factors and the relationship between pre-death factors and post-death grief and services used to manage grief.
Design:
(Prospero protocol: CRD42020165071) We systematically reviewed literature from PsycINFO, MEDLINE, CINAHL, and ASSIA until April 2020. Effectiveness of intervention data and studies not written in English were excluded; qualitative studies were additionally excluded during study selection. Study quality was assessed using the Mixed Methods Appraisal Tool. Evidence was narratively summarized.
Participants:
Family non-paid carers of somebody with any dementia type.
Measurements:
Validated measures of pre-death and/or post-death grief.
Results:
We included quantitative data from 55 studies (44 rated as high quality). Most included solely spouse or adult child carers. Forty-one studies reported pre-death grief, 12 post-death grief, and 6 service use; eight were longitudinal. 17% met the Prolonged Grief Disorder criteria pre-death (n = 1) and 6–26% (n = 4) of participants met the Complicated Grief criteria post-death. Being a spouse, less educated, caring for somebody with advanced dementia, and greater burden and depression were associated with higher pre-death grief. Lower education level and depression were predictive of higher post-death grief. Pre-death factors found to influence post-death grief were grief and depression. Limited service use evidence was reported.
Conclusion:
Awareness of characteristics which increase the likelihood of higher grief can help identify those in need of support. Future research should focus on what supports or services are beneficial to grief experiences.
This study aimed to investigate the relationship between depression in older nursing home residents and family caregivers’ (FCGs) depressive status and reasons for involvement with residents.
Design:
This study employed a cross-sectional design.
Setting:
Eight nursing homes in northern Taiwan.
Participants:
A total of 139 older resident–FCG pairs were recruited.
Measurements:
Depression was measured with the Geriatric Depression Scale-Short Form for nursing home residents and the Center for Epidemiologic Studies Depression Scale-Short Form for family members. Depression and demographic data were collected with face-to-face interviews. The meaning ascribed to caregivers’ nursing home visits was calibrated using the Family Meaning of Nursing-Home Visits scale. Multiple logistic regression was used to understand the factors related to residents’ depressive symptoms.
Results:
Depressive symptoms were present in 58.3% of the nursing home residents (n = 81). Depressive status of family members (Chi-square = 1.46, p = 0.23) or family’s visiting frequency (Chi-square = 1.64, p = 0.44) did not differ between residents with or without depressive symptoms. Factors associated with an increased risk of residents having depressive symptoms were age, self-perceived health status, and having a caregiver motivated to visit to assuage their guilt.
Conclusions:
Visiting a family member to assuage their guilt was the only caregiver variable associated with depressive symptoms for nursing home residents. This finding suggests that developing interventions to improve personal relationships between nursing home residents and family members might facilitate the emotional support of caregivers and psychological support for older nursing home residents in Taiwan.
DISTINCT is a Marie Sklodowska-Curie Innovative Training Network. Supported by the INTERDEM network and European Association of Geriatric Psychiatry, DISTINCT aimed to establish a multi-disciplinary, multi-professional and intersectorial European research framework, for assistive technologies to support social health in dementia. In this symposium, we present research associated with the maturity lifecycle (development to evaluation) of four technologies: the ROADMAP online self-management intervention; online peer support for people with young onset dementia; online acceptance and commitment therapy for caregivers (ACT); and the FindMyApps tablet-based intervention for people with dementia and their caregiver.
Method:
In 2019, 15 ESRs were recruited to 13 research organizations across 8 European countries. Research projects were launched in collaboration with people living with dementia and caregivers, and industry partners. Projects were adapted to meet challenges and opportunities due to the COVID-19 pandemic. The projects presented in this symposium employed a variety of research paradigms (user-centred design, feasibility and implementation studies, randomized controlled trials). Key insights from each project were combined into best practice guidance for developers, researchers, healthcare professionals and people living with dementia, covering the full innovation lifecycle.
Results:
All DISTINCT research projects are now in the final stages, having so far resulted in more than 35 peer reviewed publications and many contributions to international conferences. Insights were incorporated into the Best Practice Guidance for Human Interaction with Technology in Dementia, published in December 2022, which will be updated by the end of 2023 with further insights from completed projects. Key findings presented in this symposium concern: development of ROAD MAP online; best practices for, and barriers to, online peer support; acceptability and preliminary effectiveness of online ACT; effectiveness and cost effectiveness of FindMyApps.
Conclusion:
There is growing evidence that assistive technologies are feasible and effective for supporting social health of people with dementia and caregivers. People living with dementia, formal and informal caregivers, policymakers, designers, and researchers can refer to the DISTINCT Best Practice Guidance to inform their approach to assistive technology. Future research can build on these results, to further understand and improve usability, (cost-)effectiveness, and implementation of assistive technology in dementia.
This study examined the association between loneliness and risk of incident all-cause dementia and whether the association extends to specific causes of dementia.
Design:
Longitudinal.
Setting:
Community.
Participants:
Participants were from the UK Biobank (N = 492,322).
Intervention:
None.
Measurements:
Loneliness was measured with a standard item. The diagnosis of dementia was derived from health and death records, which included all-cause dementia and the specific diagnoses of Alzheimer’s disease (AD), vascular dementia (VD), and frontotemporal dementia (FTD), over 15 years of follow-up.
Results:
Feeling lonely was associated with a nearly 60% increased risk of all-cause dementia (HR = 1.59, 95% CI = 1.51–1.65; n = 7,475 incident all-cause). In cause-specific analyses, loneliness was a stronger predictor of VD (HR = 1.82, 95% CI = 1.62–2.03; n = 1,691 incident VD) than AD (HR = 1.40, 95% CI = 1.28–1.53; n = 3135 incident AD) and was, surprisingly, a strong predictor of FTD (HR = 1.64, 95% CI = 1.22–2.20; n = 252 incident FTD). The associations were robust to sensitivity analyses and were attenuated but remained significant accounting for clinical (e.g. diabetes) and behavioral (e.g. physical activity) risk factors, depression, social isolation, and genetic risk. The association between loneliness and all-cause and AD risk was moderated by APOE ϵ4 risk status such that the increased risk was apparent in both groups but stronger among non-carriers than carriers of the risk allele.
Conclusion:
Loneliness is associated with increased risk of multiple types of dementia.
Older adults experience symptoms of depression, leading to suffering and increased morbidity and mortality. Although we have effective depression therapies, physical distancing and other public health measures have severely limited access to in-person interventions.
Objective:
To describe the efficacy of virtual interventions for reducing symptoms of depression in community-dwelling older adults.
Design:
Systematic review.
Setting:
We searched MEDLINE, EMBASE, Cochrane Libraries, PsycINFO, and gray literature from inception to July 5, 2021.
Participants and interventions:
We included randomized trials (RCTs) comparing the efficacy of virtual interventions to any other virtual intervention or usual care in community-dwelling adults ≥60 years old experiencing symptoms of depression or depression as an outcome.
Measurements:
The primary outcome was change in symptoms of depression measured by any depression scale.
Results:
We screened 12,290 abstracts and 830 full text papers. We included 15 RCTs (3100 participants). Five RCTs examined persons with depression symptoms at baseline and ten examined depression as an outcome only. Included studies demonstrated feasibility of interventions such as internet or telephone cognitive behavioral therapy with some papers showing statistically significant improvement in depressive symptoms.
Conclusions:
There is a paucity of studies examining virtual interventions in older adults with depression. Given difficulty in accessing in-person therapies in a pandemic and poor access for people living in rural and remote regions, there is an urgent need to explore efficacy, effectiveness, and implementation of virtual therapies.
This study investigated the views of people living with dementia and their families/care partners on (i) what they find helpful or unhelpful regarding behavioral changes, i.e. which coping strategies they used for themselves and/or which responses from others, and (ii) what they consider to be appropriate terminology to describe behavioral changes.
Design & setting:
One-on-one semi-structured interviews were conducted with people living with dementia and families/care partners face to face, online, or over the telephone.
Measurements:
Data from open-ended questions were analyzed inductively. Common themes were derived from the data using an iterative approach.
Results:
Twenty-one people living with dementia and 20 family members/care partners were interviewed. Four main themes were derived for helpful responses, and three main themes for unhelpful responses. Helpful responses included providing clear professional support pathways and supportive environments where people living with dementia can engage in physical, cognitive, social, and spiritual activities. Unhelpful responses included discriminatory treatment from others and use of medicalized terminology. Views toward terminology varied; people with lived experience most favored using “changed behaviors” over other terminology. Areas for improvement included targeting dementia stigma, societal education on dementia, and building confidence in people living with dementia by focusing on living well with dementia.
Conclusion:
Knowledge of the views of people living with dementia may assist healthcare professionals to provide more appropriate care for people living with dementia.
Loneliness functionally varies and is determined by the degree of interaction with others. We examined weekly fluctuations in reported loneliness as a function of frequency of social interactions in old age. We hypothesized that emotional and social components of loneliness would be related to different types of social relationships.
Design:
Participants reported their feeling of loneliness and their social interaction quantity (frequency of meetings) via a weekly based diary, over 6 weeks.
Setting:
Diary study.
Participants:
The study included 55 older adults with different dwelling arrangements (M = 73.4, SD = 6.97).
Measurements:
Measures of Loneliness (the De Jong-Gierveld Loneliness Scale), Social Interaction and Contact, and sociodemographic parameters were used.
Results:
Social and emotional loneliness fluctuated over the course of the 6-week study. Frequency of meeting friends was related to emotional loneliness and total feelings of loneliness. Frequency of meeting close/trusted figures was related to emotional loneliness which appeared the following week. Other variables were not associated with either changes in loneliness or its dimensions.
Conclusions:
Loneliness in old age is changeable. The emotional component of loneliness seems to be dominant in determining overall feelings of loneliness and is more sensitive to externally chosen social interaction.
Pandemics and their public health control measures have generally substantially increased the level of loneliness and social isolation in the general population. Because of the circumstances of aging, older adults are more likely to experience social isolation and loneliness during pandemics. However, no systematic review has been conducted or published on the prevalence of loneliness and/or social isolation among the older population. This systematic review and meta-analysis aims to provide up-to-date pooled estimates of the prevalence of social isolation and loneliness among older adults during the COVID-19 pandemic and other pandemics in the last two decades.
Design:
EMBASE, PsychoINFO, Medline, and Web of Science were searched for relevant studies from January 1, 2000 to November 31, 2021 published in a variety of languages. Only studies conducted during the COVID-19 pandemic were selected in the review.
Results:
A total of 30 studies including 28,050 participants met the inclusion criteria. Overall, the pooled period prevalence of loneliness among older adults was 28.6% (95% CI: 22.9–35.0%) and 31.2% for social isolation (95% CI: 20.2–44.9%). Prevalence estimates were significantly higher for those studies conducted post 3-month from the start of the COVID-19 pandemic compared to those conducted within the first 3 months of the pandemic.
Conclusions:
This review identifies the need for good quality longitudinal studies to examine the long-term impact of pandemics on loneliness and social isolation among older populations. Health policymaking and healthcare systems should proactively address the rising demand for appropriate psychological services among older adults.
Workshop 3: Develop, implement and evaluate technology for social health in dementia: lessons in best practice from the European DISTINCT network
Scalable, cost-effective interventions to support social health in dementia are required to address growing prevalence in the face of healthcare workforce shortfalls. Until now, very few high quality studies have addressed the effectiveness of assistive technologies for social health in dementia, and almost none have evaluated the cost-effectiveness. Effectiveness of the FindMyApps intervention was investigated and an economic evaluation was undertaken.
Method:
A single-centre, non-blinded, randomized controlled trial (RCT) was conducted, comparing the effectiveness of FindMyApps with a digital care as usual control intervention (normal tablet computer with general advice). Primary outcomes measured at baseline and three month follow-up were social participation and self-management of community-dwelling people with mild cognitive impairment (MCI) or early stage dementia (MMSE 18-25), and sense of competence of their informal caregiver. Healthcare usage data was collected using a modified version of the RUD-lite instrument. Incremental costs and effectiveness associated with FindMyApps compared to the control intervention were estimated.
Results:
Data collection was completed in November 2022. Of 150 dyads randomized, follow-up data wereavailable from 128 dyads (14.7% loss to follow-up). The dataset has been cleaned and analyses are ongoing. Alongside main effects on primary outcomes, both a cost-effectiveness analysis and a cost- utility analysis will be reported, from a societal and healthcare perspective. Cost and effect differences between FindMyApps and digital care as usual will be estimated with bivariate regression analyses and incremental cost-effectiveness ratios will be reported (the difference in the mean total costs between the groups divided by the difference in mean effect between the groups). Cost-effectiveness acceptability curves will demonstrate the probability that FindMyApps is cost-effective compared to digital care as usual.
Conclusion:
The results of this study establish the extent to which FindMyApps is effective and cost-effective for supporting social health in dementia. Implications for healthcare professionals, researchers and policymakers with respect to further implementation of FindMyApps are highlighted, as well as remaining uncertainty and directions for future research. The results of this study demonstrate the feasibility of large-scale (cost-)effectiveness evaluations with assistive technology, which should be replicated as gold-standard evidence for other technologies and health priorities.
To examine the relationship between cerebrospinal fluid (CSF) biomarkers of Alzheimer’s disease (AD) and tap test response to elucidate the effects of comorbidity of AD in idiopathic normal-pressure hydrocephalus (iNPH).
Design:
Case–control study.
Setting:
Osaka University Hospital.
Participants:
Patients with possible iNPH underwent a CSF tap test.
Measurements:
Concentrations of amyloid beta (Aβ) 1–40, 1–42, and total tau in CSF were measured. The response of tap test was judged using Timed Up and Go test (TUG), 10-m reciprocation walking test (10MWT), Mini-Mental State Examination (MMSE), and iNPH grading scale. The ratio of Aβ1–42 to Aβ1–40 (Aβ42/40 ratio) and total tau concentration was compared between tap test-negative (iNPH-nTT) and -positive (iNPH-pTT) patients.
Results:
We identified 27 patients as iNPH-nTT and 81 as iNPH-pTT. Aβ42/40 ratio was significantly lower (mean [SD] = 0.063 [0.026] vs. 0.083 [0.036], p = 0.008), and total tau in CSF was significantly higher (mean [SD] = 385.6 [237.2] vs. 293.6 [165.0], p = 0.028) in iNPH-nTT than in iNPH-pTT. Stepwise logistic regression analysis revealed that low Aβ42/40 ratio was significantly associated with the negativity of the tap test. The response of cognition was significantly related to Aβ42/40 ratio. The association between Aβ42/40 ratio and tap test response, especially in cognition, remained after adjusting for disease duration and severity at baseline.
Conclusions:
A low CSF Aβ42/40 ratio is associated with a poorer cognitive response, but not gait and urinary response, to a tap test in iNPH. Even if CSF biomarkers suggest AD comorbidity, treatment with iNPH may be effective for gait and urinary dysfunction.