Helping family carers of people with dementia to cope is cost-effective

Much policy attention is now being focused on dementia, and this includes attention to the many thousands of unpaid family carers who support people with this most devastating of illnesses. Those carers are often very stressed by their caring responsibilities. A new coping strategy delivered to individual carers could help. We describe the strategy and show how a careful evaluation demonstrated that it was both effective and cost-effective

Mild Traumatic Brain Injuries and Future Risk of Developing Alzheimer's Disease: Systematic Review and Meta-Analysis

BACKGROUND: Traumatic brain injury (TBI) increases the risk of future dementia and Alzheimer's disease (AD). However, it is unclear whether this is true for mild TBI (mTBI). OBJECTIVE: To explore the association between mTBI and subsequent risk of developing AD. METHOD: We systematically searched four electronic databases from January 1954 to April 2020. We included studies reporting primary data and where mTBI preceded AD by≥5 years. We meta-analyzed included studies for both high quality studies and studies with a follow up of > 10 years. RESULT: We included 5 of the 10,435 results found. Meta-analysis found a history of mTBI increased risk of AD (pooled relative risk = 1.18, 95% CI 1.11-1.25, N = 3,149,740). The sensitivity analysis including only studies in which mTBI preceded AD by > 10 years, excluded two very large studies and resulted in wider confidence intervals (RR = 2.02, 95% CI 0.66-6.21, N = 2307). CONCLUSION: There is an increased risk of AD following mTBI. Our findings of increased risk even with mTBI means it cannot be assumed that mild head injuries from sports are harmless. The sensitivity analysis suggests that we cannot exclude reverse causation, and longer follow up times are needed. Implementation of policy to reduce mTBIs, including in children and sportsmen, are urgently needed. Further research is needed on the effect of frequency and age at injury of mTBIs

Experience of UK Latin Americans caring for a relative living with dementia: A qualitative study of family carers

INTRODUCTION: Most studies of the Latin American immigrant experience and care for relatives living with dementia have been in the United States (US). In the United Kingdom (UK), unlike the US, most Latin Americans are first generation immigrants and are a rapidly increasing population. Therefore, we aimed to explore the UK experiences of Latin Americans caring for a relative with dementia. METHODS: We purposively recruited UK-based Latin American family carers of people with dementia ensuring maximum diversity. We conducted semi-structured qualitative interviews (in English or Spanish) with 11 family carers, stopping recruiting when we reached thematic saturation. We took an inductive thematic analytic approach. FINDINGS: Four main themes were identified: (1) Family comes first, particularly older people, leading to an obligation to care; (2) dementia as an illness that is accepted and talked about, which is regarded as positive with close networks but not wider society; (3) difficult behaviours are not the responsibility of the person with dementia, who is often conceptualised as a child; and (4) caring expectations lead to incompatibility with formal services, and a reluctance to leave people with dementia alone. CONCLUSIONS: Familial obligation is the driver for family carers and acceptance of the illness helped despite adversities. Openness to talk about dementia with close networks was distinctive and helpful, contrasting with wider society, where greater awareness of dementia is needed. Considering the person with dementia as a child did not seem to undermine personhood and enabled maintenance of compassion. The relative with dementia was a priority. There was a lack of culturally and linguistically appropriate services, thus restricting family carers' ability to fulfil other roles, such as parental

Risk factors, ethnicity and dementia: A UK Biobank prospective cohort study of White, South Asian and Black participants

BACKGROUND: Our knowledge of the effect of potentially modifiable risks factors on people developing dementia is mostly from European origin populations. We aimed to explore if these risk factors had similar effects in United Kingdom (UK) White, South Asian and Black UK Biobank participants recruited from 2006-2010 and followed up until 2020. METHODS: We reviewed the literature to 25.09.2020 for meta-analyses identifying potentially modifiable risk factors preceding dementia diagnosis by ≥10 years. We calculated prevalence of each identified risk factor and association with dementia for participants aged ≥55 at registration in UK Biobank. We calculated hazard ratios using Cox regression for each risk factor, stratified by ethnic group, and tested for differences using interaction effects between each risk factor and ethnicity. FINDINGS: We included education, hearing loss, hypertension, obesity, excess alcohol consumption, physical inactivity, smoking, high total cholesterol, depression, diabetes, social isolation, and air pollution as risks. Out of 294,162 participants, there were 287,806 White, 3590 South Asian and 2766 Black people, followed up for up to 14.8 years, with a total follow-up time of 3,392,095 years. During follow-up, 5,972 people (2.03%) developed dementia. Risk of dementia was higher in Black participants than White participants (HR for dementia compared to White participants as reference 1.43, 95% CI 1.16-1.77, p = 0.001) but South Asians had a similar risk. Association between each risk factor and dementia was similar in each ethnic group with no evidence to support any differences. INTERPRETATION: We find that Black participants were more likely to develop dementia than White participants, but South Asians were not. Identified risk factors in White European origin participants had a similar effect in Black and South Asian origin participants. Volunteers in UK Biobank are not representative of the population and interaction effects were underpowered so further work is needed

Socially assistive robots for people with dementia: systematic review and meta-analysis of feasibility, acceptability and the effect on cognition, neuropsychiatric symptoms and quality of life

BACKGROUND: There is increasing interest in using robots to support dementia care but little consensus on the evidence for their use. The aim of the study is to review evidence about feasibility, acceptability and clinical effectiveness of socially assistive robots used for people with dementia. METHOD: We conducted a systematic review and meta-analysis. We searched MEDLINE, EMBASE, PsychINFO, CINHAL, IEEE Xplore Digital Library, and EI Engineering Village from inception to 04 -02-2022 - included primary studies assessing feasibility, acceptability, or effectiveness of socially assistive robots for people with dementia. Two independent reviewers screened studies for eligibility, and assessed quality. Narrative synthesis prioritized higher quality studies, and random-effect meta-analyses compared robots with usual care (UC) or active control (AC) immediately after the intervention (short-term; ST) or long-term (LT) on cognition, neuropsychiatric symptoms, and quality of life. FINDINGS: 66 studies and four categories of robots were eligible: Companion robots (Pet and humanoid companion robots), telepresence communication robots, homecare assistive robots and multifunctional robots. PARO (companion robot seal) was feasible and acceptable but limited by its weight, cost, and sound. On meta-analysis, PARO had no ST or LT compared to UC or AC over 5-12 weeks on agitation (ST vs UC, 4 trials, 153 participants: pooled standardized mean difference (SMD) 0.25; -0.57 to 0.06; LT vs UC; 2 trials, 77 participants, SMD =-0.24; -0.94, 0.46), cognition (ST vs UC, 3 trials, 128 participants: SMD= 0.03; -0.32, 0.38), overall neuropsychiatric symptoms (ST vs UC, 3 trials, 169 participants: SMD= -0.01; -0.32, 0.29; ST vs AC, 2 trials, 145 participants: SMD =0.02, -0.71, 0.85), apathy (ST vs AC, 2 trials, 81 participants: SMD= 0.14; 0.29, 0.58), depression (ST vs UC, 4 trials, 181 participants; SMD= 0.08; -0.52, 0.69; LT vs UC: 2 trials, 77 participants: SMD =0.01; -0.75, 0.77), anxiety (ST vs UC: 2 trials, 104 participants, SMD= 0.24; -0.85, 1.33) and quality of life (ST vs UC, 2 trials, 127 participants: SMD=-0.05; -0.52, 0.42; ST vs AC: 2 trials, 159 participants, SMD =-0.36, -0.76, 0.05). Robotic animals, humanoid companion robots, telepresence robots and multifunctional robots were feasible and acceptable. However, humanoid companion robots have speech recognition problems, and telepresence robots and multifunctional robots were often difficult to use. There was mixed evidence about the feasibility of homecare robots. There was little evidence on any of these robots' effectiveness. CONCLUSION: Although robots were generally feasible and acceptable, there is no clear evidence that people with dementia derive benefit from robots for cognition, neuropsychiatric symptoms, or quality of life. We recommend that future research should use high quality designs to establish evidence of effectiveness

Apathy in UK Care Home Residents with Dementia: Longitudinal Course and Determinants

Background: Apathy in dementia is common and associated with worse disease outcomes. // Objective: To describe the longitudinal course of apathy in dementia and identify associated sociodemographic and disease-related factors. // Methods: Prospective cohort study of UK care home residents with dementia. At baseline, 4, 8, 12, and 16 months, care home staff rated apathy using the Neuropsychiatric Inventory (clinically-significant apathy if≥4), dementia severity, and provided other sociodemographic information about each participant. We examined the prevalence and persistence of apathy and, in mixed linear models, its association with time, age, sex, dementia severity, antipsychotic use, and baseline apathy and other neuropsychiatric symptoms. // Results: Of 1,419 included participants (mean age 85 years (SD 8.5)), 30% had mild dementia, 33% moderate, and 37% severe. The point prevalence of clinically-significant apathy was 21.4% (n = 304) and the 16-month period prevalence was 47.3% (n = 671). Of participants with follow-up data, 45 (3.8%) were always clinically-significantly apathetic, 3 (0.3%) were always sub-clinically apathetic, and 420 (36.2%) were never apathetic until death or end of follow-up. In adjusted models, apathy increased over time and was associated with having more severe dementia, worse baseline apathy and other neuropsychiatric symptoms. // Conclusion: It is important for clinicians to know that most people with dementia are not apathetic, though it is common. Most of those with significant symptoms of apathy improve without specific treatments, although some also relapse, meaning that intervention may not be needed. Future research should seek to target those people with persistent severe apathy and test treatments in this group

Making decisions for people with dementia who lack capacity: qualitative study of family carers in UK

Objective To identify common difficult decisions made by family carers on behalf of people with dementia, and facilitators of and barriers to such decisions, in order to produce information for family carers about overcoming barriers

Equity in care and support provision for people affected by dementia: experiences of people from UK South Asian and White British backgrounds

OBJECTIVES: To explore the care and support received and wanted by United Kingdom (UK) South Asian and White British people affected by dementia and whether access to it is equitable. DESIGN: Semi-structured interviews using a topic guide. SETTING: Eight memory clinics across four UK National Health Service Trusts; three in London and one in Leicester. PARTICIPANTS: We purposefully recruited a maximum variation sample of people living with dementia from South Asian or White British backgrounds, their family carers, and memory clinic clinicians. We interviewed 62 participants including 13 people living with dementia, 24 family carers, and 25 clinicians. MEASUREMENTS: We audio-recorded interviews, transcribed them, and analyzed them using reflexive thematic analysis. RESULTS: People from either background were willing to accept needed care and wanted competence and communication from carers. South Asian people frequently discussed needing care from someone with a shared language, but language differences could also be an issue for White British people. Some clinicians thought South Asian people had a stronger preference to provide care within the family. We found that preferences for who provides care varied across families regardless of ethnicity. Those with more financial resources and English language have more options for care that meets their needs. CONCLUSIONS: People of the same background make differing choices about care. Equitable access to care is impacted by people’s personal resources, and people from South Asian backgrounds may experience the double disadvantage of having fewer options for care that meets their needs and fewer resources to seek care elsewhere

The minimum clinically important difference on the sleep disorders inventory for people dementia

Objectives: Sleep disturbances in dementia causes distress to people with dementia and their family carers and are associated with care home admission. The Sleep Disorders Inventory (SDI) is a validated questionnaire of sleep disturbances in dementia often used to measure treatment effectiveness, but the minimum clinically important difference (MCID) is unknown. Methods: We triangulated three investigative methods to determine the MCID of the SDI. Using data on SDI from a randomised controlled trial (RCT) with 62 participants in an intervention for sleep disorders in dementia, we (1) calculated distribution-based values where MCID = 0.33 of a SD (SD) (2) an anchor based approach using quality of life (measured using DEMQOL-Proxy) as an anchor. We also employed a Delphi consensus process asking 12 clinicians, sleep researchers and family carers to rate which changes on vignettes were equivalent to a MCID. Results: We found that 0.33 SD in the SDI = 4.86. Reduction in SDI total score was not significantly correlated with improvement in DEMQOL-Proxy (Pearson's correlation = −0.01; P = 0.96) score. The Delphi consensus required two rounds to reach a consensus and concluded that changes equivalent to three points on the SDI equated to the MCID. Conclusions: Taking into account both the distribution-based values and the Delphi process we used a whole number at the midpoint and judged the minimum clinically important difference MCID to be equal to four points. We note the clinicians and carers opinions from the Delphi process determined the MCID to be lower at three points