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As in other countries, Portuguese family caregivers have unmet needs regarding information and distress. START (STrAtegies for RelaTives) is a manual-based coping intervention for families of people with dementia, including coping strategies and stress-management components, by Livingston and colleagues (https://www.ucl.ac.uk/psychiatry/research/mental-health-older-people/projects/start). In the UK, START has been clinically effective, immediately and continuing even after 6-years, without increasing costs. Clinical training and supervision ensures treatment fidelity. In Portugal, these kind of interventions are less available and, when provided, are mostly supportive and fail to address coping strategies. Paradoxically, recruitment may also prove challenging.
We describe the development of the Portuguese translation of START, incorporating guidance from the UK team, and a pilot study of delivery to family caregivers of people with dementia. We will also discuss the challenges of recruiting participants and delivering the intervention.
We translated the START intervention and recruited family caregivers from neurology and psychiatry outpatients, in a central hospital in Lisbon. Our baseline assessment included the Hospital Anxiety and Depression Scale and the Zarit Burden Interview. The pilot is still ongoing at time of submitting, so we focus on recruitment, baseline assessments and process issues.
During a three-month period, we recruited six caregivers. Five were primary caregivers (spouses or adult children) who had been caring for their relatives for 2 up to 10 years. Two caregivers met the international cutoff for clinically relevant affective disorder . The most frequent motivators for taking part were learning to communicate with their relatives and increasing knowledge to build community resources. Overall, the subjective impression of the therapist in charge is that the intervention seems acceptable and promising.
This pilot study will eventually lead to an improved version of the Portuguese version of the START manual. So far, the intervention seems appropriate for selected caregivers in Portugal. However, response to striking unmet needs, particularly basic home support, may need to precede interventions like START. We look forward to concluding the intervention study and analyzing the implementation challenges, as a basis to inform a wider-scale trial.
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.
Chapter 1 discusses the welcome drop in early death and the corresponding rise in the numbers of older people and those with dementia. In tandem with the rise in the numbers of older people throughout the world comes the increase in the numbers of family carers who are looking after them. More than 70% of people with dementia in high-income countries live in their own homes supported mainly by family [1,2]. In low- and middle-income countries there is less care home provision and thus a higher percentage of people with dementia live at home .
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.
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.
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.
Family carers of people with dementia frequently report acting abusively toward them and carer psychological morbidity predicts this. We investigated whether START (STrAtegies for RelaTives), a psychological intervention which reduces depression and anxiety in family carers also reduces abusive behavior in carers of people living in their own homes. We also explored the longitudinal course of carer abusive behavior over two year.
We included self-identified family carers who gave support at least weekly to people with dementia referred in the previous year to three UK mental health services and a neurological dementia service. We randomly assigned these carers to START, an eight-session, manual-based coping intervention, or treatment as usual (TAU). Carer abusive behavior (Modified Conflict Tactic Scale (MCTS) score ≥2 representing significant abuse) was assessed at baseline, 4, 8, 12, and 24 months.
We recruited 260 carers, 173 to START and 87 to TAU. There was no evidence that abusive behavior levels differed between randomization groups or changed over time. A quarter of carers still reported significant abuse after two years, but those not acting abusively at baseline did not become abusive.
There was no evidence that START, which reduced carer anxiety and depression, reduced carer abusive behavior. For ethical reasons, we frequently intervened to manage concerning abuse reported in both groups, which may have disguised an intervention effect. Future dementia research should include elder abuse as an outcome, and consider carefully how to manage detected abuse.
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