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Depression is an important, potentially modifiable dementia risk factor. However, it is not known whether effective treatment of depression through psychological therapies is associated with reduced dementia incidence. The aim of this study was to investigate associations between reduction in depressive symptoms following psychological therapy and the subsequent incidence of dementia.
National psychological therapy data were linked with hospital records of dementia diagnosis for 119808 people aged 65+. Participants received a course of psychological therapy treatment in Improving Access to Psychological Therapies (IAPT) services between 2012 and 2019. Cox proportional hazards models were run to test associations between improvement in depression following psychological therapy and incidence of dementia diagnosis up to eight years later.
Improvements in depression following treatment were associated with reduced rates of dementia diagnosis up to 8 years later (HR = 0.88, 95% CI 0.83–0.94), after adjustment for key covariates. Strongest effects were observed for vascular dementia (HR = 0.86, 95% CI 0.77–0.97) compared with Alzheimer's disease (HR = 0.91, 95% CI 0.83–1.00).
Reliable improvement in depression across psychological therapy was associated with reduced incidence of future dementia. Results are consistent with at least two possibilities. Firstly, psychological interventions to improve symptoms of depression may have the potential to contribute to dementia risk reduction efforts. Secondly, psychological therapies may be less effective in people with underlying dementia pathology or they may be more likely to drop out of therapy (reverse causality). Tackling the under-representation of older people in psychological therapies and optimizing therapy outcomes is an important goal for future research.
Much has been written on the theory that congenital blindness might protect against schizophrenia, but proof remains elusive. It has been suggested that visual ability might be associated with schizophrenia in a bell-shaped distribution, with both lifelong absent and perfect vision being protective. Alternatively, ocular aberrations and schizophrenia may share an aetiology. Any neuronal pathology implicated in schizophrenia could affect the retina, since it is an embryological extension of the brain. The retina is more amenable to direct imaging than other parts of the central nervous system and may give unique insights into schizophrenia-associated neuropathology. It is also possible that psychosis causes visual impairment: people with psychotic illnesses are probably not accessing optical care optimally and have higher levels of risk factors for visual loss.
Concerns persist that some ethnic minority groups experience longstanding mental health inequalities in England. It is unclear if these have changed over time.
To assess the prevalence of common mental disorders (CMDs) and treatment receipt by ethnicity, and changes over time, using data from the nationally representative probability sample in the Adult Psychiatric Morbidity Surveys.
We used survey data from 2007 (n = 7187) and 2014 (n = 7413). A Clinical Interview Schedule – Revised score of ≥12 indicated presence of a CMD. Treatment receipt included current antidepressant use; any counselling or therapy; seeing a general practitioner about mental health; or seeing a community psychiatrist, psychologist or psychiatric nurse, in the past 12 months. Multivariable logistic regression assessed CMD prevalence and treatment receipt by ethnicity.
CMD prevalence was highest in the Black group; ethnic variation was explained by demographic and socioeconomic factors. After adjustment for these factors and CMDs, odds ratios for treatment receipt were lower for the Asian (0.62, 95% CI 0.39−1.00) and White Other (0.58, 95% CI 0.38–0.87) groups in 2014, compared with the White British group; for the Black group, this inequality appeared to be widening over time (2007 treatment receipt odds ratio 0.68, 95% CI 0.38−1.23; 2014 treatment receipt odds ratio 0.23, 95% CI 0.13−0.40; survey year interaction P < 0.0001).
Treatment receipt was lower for all ethnic minority groups compared with the White British group, and lowest among Black people, for whom inequalities appear to be widening over time. Addressing socioeconomic inequality could reduce ethnic inequalities in mental health problems, but this does not explain pronounced treatment inequalities.
Despite policy pressure and concerns regarding the use of antipsychotics and benzodiazepines, many care home residents with dementia are prescribed psychotropic medication, often off licence. This is the first large study to report psychotropic prescribing and ‘as required’ administration patterns in English care homes.
To explore the prevalence and associates of psychotropic prescription in care home residents with dementia and compare the results with national guidance.
We collected data in a longitudinal cohort study of residents with diagnosed or probable dementia in 86 care homes in England in 2014–2016. We reported the prevalence of psychotropic (antipsychotics, anxiolytics/hypnotics, antidepressants) prescriptions and drug receipt. We explored the associations between resident factors (sociodemographic, agitation [Cohen–Mansfield Agitation Inventory], dementia severity [Clinical Dementia Rating]) and care home factors (type, ownership, size, dementia registration/specialism, quality rating) in prescription and ‘as required’ administration, using multilevel regression models.
We analysed data from 1425 residents. At baseline, 822 residents (57.7%, 95% CI: 55.1–60.2) were prescribed a psychotropic drug, 310 residents (21.8% 95% CI: 19.7–24.0) were prescribed an anxiolytic/hypnotic, 232 (94.3%, 95% CI: 90.6–96.6) were prescribed one antipsychotic and 14 (5.7%, 95% CI: 3.4–9.4) were prescribed two antipsychotics. The median prescription duration during the study was 1 year. Residents with clinically significant agitation were prescribed more antipsychotics (odds ratio [OR] = 2.00, 95% CI: 1.64–2.45) and anxiolytics/hypnotics (OR = 2.81, 95% CI: 2.31–3.40).
Antipsychotics and anxiolytics/hypnotics are more commonly prescribed for people with dementia in care homes than in the community, and prescribing may not reflect guidelines. Policies which advocate reduced use of psychotropics should better support psychosocial interventions.
Family caregivers of people with dementia can experience loss and grief before death. We hypothesized that modifiable factors indicating preparation for end of life are associated with lower pre-death grief in caregivers.
Caregivers of people with dementia living at home or in a care home.
In total, 150 caregivers, 77% female, mean age 63.0 (SD = 12.1). Participants cared for people with mild (25%), moderate (43%), or severe dementia (32%).
Primary outcome: Marwit-Meuser Caregiver Grief Inventory Short Form (MMCGI-SF). We included five factors reflecting preparation for end of life: (1) knowledge of dementia, (2) social support, (3) feeling supported by healthcare providers, (4) formalized end of life documents, and (5) end-of-life discussions with the person with dementia. We used multiple regression to assess associations between pre-death grief and preparation for end of life while controlling for confounders. We repeated this analysis with MMCGI-SF subscales (“personal sacrifice burden”; “heartfelt sadness”; “worry and felt isolation”).
Only one hypothesized factor (reduced social support) was strongly associated with higher grief intensity along with the confounders of female gender, spouse, or adult child relationship type and reduced relationship closeness. In exploratory analyses of MMCGI-SF subscales, one additional hypothesized factor was statistically significant; higher dementia knowledge was associated with lower “heartfelt sadness.”
We found limited support for our hypothesis. Future research may benefit from exploring strategies for enhancing caregivers’ social support and networks as well as the effectiveness of educational interventions about the progression of dementia (ClinicalTrials.gov ID: NCT03332979).
Shortcomings of randomised controlled clinical trials include their high cost, which often precludes very long-term studies and very large populations, and ethical constraints of randomisation. Observational studies are a valuable alternative and we outline their use in epidemiological research to study very long-term effects of lifestyle and medication on dementia, to explore (using Mendelian randomisation) the association between Alzheimer's dementia and individual traits, and to evaluate population-wide health inequalities and lifespan changes in risk factors for psychiatric illness.
People with sensory impairments may be at increased risk of depression and anxiety but experience barriers to accessing treatment.
To investigate whether people with sensory impairment have more depressive and anxiety symptoms than people without, whether this is mediated by social functioning and whether they report greater non-treatment.
We analysed data from the English 2014 Adult Psychiatric Morbidity Survey using regression models, with the Clinical Interview Schedule-Revised (CIS-R) score as the primary outcome and self-reported hearing and vision impairment as exposures. A secondary outcome was self-reported receipt of mental health diagnosis and treatment. We used structural equation modelling to assess for mediation by social functioning.
A total of 19.0% of people with hearing impairment, and 30.9% and 24.5% with distance and near visual impairments, respectively, had clinically significant psychological morbidity. Adjusted mean CIS-R score was 1.86 points higher in people with hearing impairment compared with those without (95% CI 1.30–2.42, P<0.001). People with distance and near vision impairment had mean CIS-R scores 3.61 (95% CI 2.58–4.63, P<0.001) and 2.74 (95% CI 2.12–3.37, P<0.001) points higher, respectively, than those without. Social functioning accounted for approximately 50% of these relationships between sensory impairment and psychological morbidity. We found no evidence of an increased treatment gap for people with sensory impairment.
Social functioning, a potentially modifiable target, may mediate an association between sensory impairment and depressive and anxiety symptoms.
The START (STrAtegies for RelaTives) intervention reduced depressive and anxiety symptoms of family carers of relatives with dementia at home over 2 years and was cost-effective.
To assess the clinical effectiveness over 6 years and the impact on costs and care home admission.
We conducted a randomised, parallel group, superiority trial recruiting from 4 November 2009 to 8 June 2011 with 6-year follow-up (trial registration: ISCTRN 70017938). A total of 260 self-identified family carers of people with dementia were randomised 2:1 to START, an eight-session manual-based coping intervention delivered by supervised psychology graduates, or to treatment as usual (TAU). The primary outcome was affective symptoms (Hospital Anxiety and Depression Scale, total score (HADS-T)). Secondary outcomes included patient and carer service costs and care home admission.
In total, 222 (85.4%) of 173 carers randomised to START and 87 to TAU were included in the 6-year clinical efficacy analysis. Over 72 months, compared with TAU, the intervention group had improved scores on HADS-T (adjusted mean difference −2.00 points, 95% CI −3.38 to −0.63). Patient-related costs (START versus TAU, respectively: median £5759 v. £16 964 in the final year; P = 0.07) and carer-related costs (median £377 v. £274 in the final year) were not significantly different between groups nor were group differences in time until care home (intensity ratio START:TAU was 0.88, 95% CI 0.58–1.35).
START is clinically effective and this effect lasts for 6 years without increasing costs. This is the first intervention with such a long-term clinical and possible economic benefit and has potential to make a difference to individual carers.
Declarations of interest
G.L., Z.W. and C.C. are supported by the UCLH National Institute for Health Research (NIHR) Biomedical Research Centre. G.L. and P.R. were in part supported by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC) North Thames at Bart's Health NHS Trust. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health. Z.W. reports during the conduct of the study; personal fees from GE Healthcare, grants from GE Healthcare, grants from Lundbeck, other from GE Healthcare, outside the submitted work.
This chapter discusses ethical principles and legal frameworks for protecting those who are vulnerable due to mental or cognitive illness that are generally comparable across countries. The specific laws discussed here are those for England and Wales.
Care home staff stress and burnout may be related to high turnover and associated with poorer quality care. We systematically reviewed and meta-analyzed studies reporting stress and burnout and associated factors in staff for people living with dementia in long-term care.
We searched MEDLINE, PsycINFO, Web of Science databases, and CINAHL database from January 2009 to August 2017. Two raters independently rated study validity using standardized criteria. We meta-analyzed burnout scores across comparable studies using a random effects model.
17/2854 identified studies met inclusion criteria. Eight of the nine studies reporting mean Maslach Burnout Inventory (MBI) scores found low or moderate burnout levels. Meta-analysis of four studies using the 22-item MBI (n = 598) found moderate emotional exhaustion levels (mean 18.34, 95% Confidence Intervals 14.59–22.10), low depersonalization (6.29, 2.39–10.19), and moderate personal accomplishment (33.29, 20.13–46.46). All three studies examining mental health-related quality of life reported lower levels in carer age and sex matched populations. Staff factors associated with higher burnout and stress included: lower job satisfaction, lower perceived adequacy of staffing levels, poor care home environment, feeling unsupported, rating home leadership as poor and caring for residents exhibiting agitated behavior. There was preliminary evidence that speaking English as a first language and working shifts were associated with lower burnout levels.
Most care staff for long-term care residents with dementia experience low or moderate burnout levels. Prospective studies of care staff burnout and stress are required to clarify its relationship to staff turnover and potentially modifiable risk factors.
40% of people with dementia have disturbed sleep but there are currently no known effective treatments. Studies of sleep hygiene and light therapy have not been powered to indicate feasibility and acceptability and have shown 40–50% retention. We tested the feasibility and acceptability of a six-session manualized evidence-based non-pharmacological therapy; Dementia RElAted Manual for Sleep; STrAtegies for RelaTives (DREAMS-START) for sleep disturbance in people with dementia.
We conducted a parallel, two-armed, single-blind randomized trial and randomized 2:1 to intervention: Treatment as Usual. Eligible participants had dementia and sleep disturbances (scoring ≥4 on one Sleep Disorders Inventory item) and a family carer and were recruited from two London memory services and Join Dementia Research. Participants wore an actiwatch for two weeks pre-randomization. Trained, clinically supervised psychology graduates delivered DREAMS-START to carers randomized to intervention; covering Understanding sleep and dementia; Making a plan (incorporating actiwatch information, light exposure using a light box); Daytime activity and routine; Difficult night-time behaviors; Taking care of your own (carer's) sleep; and What works? Strategies for the future. Carers kept their manual, light box, and relaxation recordings post-intervention. Outcome assessment was masked to allocation. The co-primary outcomes were feasibility (≥50% eligible people consenting to the study) and acceptability (≥75% of intervention group attending ≥4 intervention sessions).
In total, 63out of 95 (66%; 95% CI: 56–76%) eligible referrals consented between 04/08/2016 and 24/03/2017; 62 (65%; 95% CI: 55–75%) were randomized, and 37 out of 42 (88%; 95% CI: 75–96%) adhered to the intervention.
DREAM-START for sleep disorders in dementia is feasible and acceptable.
Brainfood is a 5-week group intervention for people with mild cognitive impairment and mild dementia, promoting cognitive health through a Mediterranean-style diet, exercise, mindfulness and health self-management.
To evaluate Brainfood acceptability and the feasibility of conducting a randomised controlled trial; in a single group study in two National Health Service (NHS) memory services.
Participants self-completed quantitative and semi-structured questionnaires. Recruitment, attendance and outcome completion were the primary outcomes.
In total, 30 of 59 people invited to Brainfood attended; of the 26 (87%) who completed baseline measures: 25 (96%) completed post-intervention quantitative measures, 16 (67%) qualitative questions and 21 (81%) attended ≥3/5 sessions. Compared with baseline, participants reported significantly higher quality of life, Mediterranean diet adherence and exercising more, up to 2 months after the groups. Participants valued the groups and felt enabled to improve their well-being.
Brainfood was acceptable and feasible to implement in an NHS setting.
Declaration of interest
A.B. and C.C. developed Brainfood – they hold a creative commons license for the manual and make it available to use for free to all. The manual evolves iteratively, but the manual used in this research study is provided in an online supplement.
Family carers report high levels of decisional conflict when deciding whether their relative with dementia can continue to be cared for in their own home. We tested, in a feasibility randomised controlled trial, the first decision aid (the DECIDE manual) aiming to reduce such conflict. Twenty family carers received the DECIDE intervention, and 21 received usual treatment. The intervention group had reduced decisional conflict compared with controls (mean difference −11.96, 95% confidence interval −20.10 to −3.83, P=0.005). All carers receiving the intervention completed and valued it, despite some still reporting difficulties with family conflict and problems negotiating services.
Agitation is reportedly the most common neuropsychiatric symptom in care home residents with dementia.
To report, in a large care home survey, prevalence and determinants of agitation in residents with dementia.
We interviewed staff from 86 care homes between 13 January 2014 and 12 November 2015 about residents with dementia with respect to agitation (Cohen-Mansfield Agitation Inventory (CMAI)), quality of life (DEMQOL-proxy) and dementia severity (Clinical Dementia Rating). We also interviewed residents and their relatives. We used random effects models adjusted for resident age, gender, dementia severity and care home type with CMAI as a continuous score.
Out of 3053 (86.2%) residents who had dementia, 1489 (52.7%) eligible residents participated. Fifteen per cent of residents with very mild dementia had clinically significant agitation compared with 33% with mild (odds ratios (ORs)=4.49 95% confidence interval (CI)=2.30) and 45% with moderate or severe dementia (OR=6.95 95% CI=3.63, 13.31 and OR=6.23 95% CI=3.25, 11.94, respectively). More agitation was associated with lower quality of life (regression coefficient (rc)=-0.53; 95% CI=-0.61, -0.46) but not with staffing or resident ratio (rc=0.03; 95% CI=-0.04, 0.11), level of residents' engagement in home activities (rc=3.21; 95% CI=-0.82, 7.21) or family visit numbers (rc=-0.03; 95% CI=-0.15, 0.08). It was correlated with antipsychotic use (rc=6.45; 95% CI=3.98, 8.91).
Care home residents with dementia and agitation have lower quality of life. More staffing time and activities as currently provided are not associated with lower agitation levels. New approaches to develop staff skills in understanding and responding to the underlying reasons for individual resident's agitation require development and testing.
We recruited eight general practice (GP) practices for a pilot cluster randomized controlled trial (RCT) of a digital versatile disc/leaflet encouraging South Asian people to seek timely help for memory problems. Primary outcomes were feasibility (proportion of patients expressing interest, consenting) and acceptability. Seventy-eight of one hundred and two (76%) potential participants consented; 76/78 (97%) were followed-up. Thirty-seven of forty-one (90%) receiving the intervention rated this acceptable. Only 17/41 (41%) accessed it; they appeared then to be more likely to seek timely help. The intervention was acceptable and feasible but a full-scale RCT would be very expensive. It may be proportionate to make this intervention available without a full-scale RCT.
Public campaigns to encourage early detection of dementia in the developed world have led to identification of more people with mild cognitive impairment (MCI) or subjective cognitive decline (SCD). Early dementia diagnosis enables earlier information and support, including symptomatic treatments where appropriate. In clinical trials, detection of those with “prodromal dementia,” identified from cognitive symptoms and stratified by biomarkers (Schneider, 2010), enables potential disease modifying treatments to be targeted early in the disease process, where success is more likely.
Quality of life (QoL) is an important outcome for people with dementia living in care homes but usually needs to be rated by a proxy. We do not know if relative or paid carer proxy reports differ. We conducted the first systematic review and meta-analysis of data investigating whether and how these proxy reports of QoL differ.
We searched four databases: Medline, Embase, PsychInfo, and CINAHL in October 2015 with the terms: dementia, QoL, proxy, and care home. Included studies either compared proxy QoL ratings or investigated the factors associated with them. We meta-analyzed data comparing staff and family proxy rated QoL.
We included 17/105 papers identified. We found no difference between global proxy ratings of QoL (n = 1,290; pooled effect size 0.06 (95% CI = −0.08 to 0.19)). Studies investigating factors associated with ratings (n = 3,537) found family and staff ratings correlated with the resident's physical and mental health. Staff who were more distressed rated resident QoL lower. Relatives rated it lower when the resident had lived in the care home for longer, when they observed more restraint, or contributed more to fees.
Relatives and staff proxy QoL ratings share a clear relationship to resident health and overall ratings were similar. Rater-specific factors were, however, also associated with scores. Understanding why different raters consider the QoL of the same person differently is an important consideration when evaluating the meaning of proxy rated QoL. Proxy raters’ backgrounds may affect their rating of QoL.
Interventions to support and skill paid home carers and managers could potentially improve health and well-being of older home care clients. This is the first systematic review of interventions to improve how home carers and home care agencies deliver care to older people, with regard to clients’ health and well-being and paid carers’ well-being, job satisfaction, and retention.
We reviewed 10/731 papers found in the electronic search (to January 2016) fitting predetermined criteria, assessed quality using a checklist, and synthesized data using quantitative and qualitative techniques.
Ten papers described eight interventions. The six quantitative evaluations used diverse outcomes that precluded meta-analysis. In the only quantitative study (a cluster Randomized Controlled Trial), rated higher quality, setting meaningful goals, carer training, and supervision improved client health-related quality of life. The interventions that improved client outcomes comprised training with additional implementation, such as regular supervision and promoted care focused around clients’ needs and goals. In our qualitative synthesis of four studies, intervention elements carers valued were greater flexibility to work to a needs-based rather than a task-based model, learning more about clients, and improved communication with management and other workers.
There is a dearth of evidence regarding effective strategies to improve how home care is delivered to older clients, particularly those with dementia. More research in this sector including feasibility testing of the first home care intervention trials to include health and life quality outcomes for clients with more severe dementia is now needed.