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Implementation of START (STrAtegies for RelaTives) for dementia carers in the third sector: Widening access to evidence-based interventions.

ABSTRACT: Family members remain the main care providers for the increasing numbers of people with dementia, and often become depressed or anxious. In an implementation research project, we aimed to widen access to Strategies for RelaTives (START), a clinically and cost-effective intervention for the mental health of family carers, by laying the foundations for its implementation in the third sector. We used the integrated Promoting Action on Research Implementation in Health Services (i-PARIHS) framework to guide implementation of START, a manual-based, individually-delivered, multicomponent eight-session coping strategy intervention. We interviewed a maximum variation sample of twenty-seven stakeholders from the English Alzheimer's Society (AS), about possible difficulties in management, training, and delivery of START. We trained and supervised three AS dementia support workers in different locations, to each deliver START to three family carers. Two researchers independently coded pre-intervention interviews for themes. We assessed intervention feasibility through monitoring delivery fidelity, rating audio-recordings from 1-5 (5 being high) and interviewing facilitators, family carers and AS managers about their experiences. We assessed effectiveness on family carers' mental health using the Hospital Anxiety and Depression Scale (HADS) before and after receiving START (scores 0-42). We changed START's format by reflecting carer diversity more and increasing carer stories prominence, but core content or delivery processes were unchanged. All carers received START and attended every session. The mean fidelity score was 4.2. Mean HADS-total score reduced from baseline 18.4 (standard deviation 7.4) to follow-up 15.8 (9.7). Six (67%) carers scored as clinically depressed on baseline HADS and 2 (22%) at follow-up. Facilitators and carers rated START positively. Appropriately experienced third sector workers can be trained and supervised to deliver START and it remains effective. This has the potential for widened access at scale.

SUBMITTER: Amador S

PROVIDER: S-EPMC8171938 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:OBJECTIVES:To analyse the experience of individual family carers of people with dementia who received a manual-based coping strategy programme (STrAtegies for RelaTives, START), demonstrated in a randomised-controlled trial to reduce affective symptoms. DESIGN:A qualitative study using self-completed questionnaires exploring the experience of the START intervention. Two researchers transcribed, coded and analysed completed questionnaires thematically. SETTING:Three mental health and one neurology dementia clinic in South East England. PARTICIPANTS:Participants were primary family carers of a patient diagnosed with dementia who provided support at least weekly to their relative. We invited those in the treatment group remaining in the START study at 2?years postrandomisation (n=132) to participate. 75 people, comprising a maximum variation sample, responded. PRIMARY AND SECONDARY OUTCOME MEASURES:(1) Important aspects of the therapy. (2) Continued use of the intervention after the end of the therapy. (3) Unhelpful aspects of the therapy and suggestions for improvement. (4) Appropriate time for intervention delivery. RESULTS:Carers identified several different components as important: relaxation techniques, education about dementia, strategies to help manage the behaviour of the person with dementia, contact with the therapist and changing unhelpful thoughts. Two-thirds of the participants reported that they continue to use the intervention's techniques at 2-year follow up. Few participants suggested changes to the intervention content, but some wanted more sessions and others wanted the involvement of more family members. Most were happy with receiving the intervention shortly after diagnosis, although some relatives of people with moderate dementia thought it should have been delivered at an earlier stage. CONCLUSIONS:Participants' varied responses about which aspects of START were helpful suggest that a multicomponent intervention is suited to the differing circumstances of dementia carers, providing a range of potentially helpful strategies. The continued use of the strategies 2?years after receiving the intervention could be a mechanism for the intervention remaining effective.

Project description:ObjectiveTo assess whether a manual based coping strategy compared with treatment as usual reduces depression and anxiety symptoms in carers of family members with dementia.DesignRandomised, parallel group, superiority trial.SettingThree mental health community services and one neurological outpatient dementia service in London and Essex, UK.Participants260 carers of family members with dementia.InterventionA manual based coping intervention comprising eight sessions and delivered by supervised psychology graduates to carers of family members with dementia. The programme consisted of psychoeducation about dementia, carers' stress, and where to get emotional support; understanding behaviours of the family member being cared for, and behavioural management techniques; changing unhelpful thoughts; promoting acceptance; assertive communication; relaxation; planning for the future; increasing pleasant activities; and maintaining skills learnt. Carers practised these techniques at home, using the manual and relaxation CDs.Main outcome measuresAffective symptoms (hospital anxiety and depression total score) at four and eight months. Secondary outcomes were depression and anxiety caseness on the hospital anxiety and depression scale; quality of life of both the carer (health status questionnaire, mental health) and the recipient of care (quality of life-Alzheimer's disease); and potentially abusive behaviour by the carer towards the recipient of care (modified conflict tactics scale).Results260 carers were recruited; 173 were randomised to the intervention and 87 to treatment as usual. Mean total scores on the hospital anxiety and depression scale were lower in the intervention group than in the treatment as usual group over the eight month evaluation period: adjusted difference in means -1.80 points (95% confidence interval -3.29 to -0.31; P=0.02) and absolute difference in means -2.0 points. Carers in the intervention group were less likely to have case level depression (odds ratio 0.24, 95% confidence interval 0.07 to 0.76) and there was a non-significant trend towards reduced case level anxiety (0.30, 0.08 to 1.05). Carers' quality of life was higher in the intervention group (difference in means 4.09, 95% confidence interval 0.34 to 7.83) but not for the recipient of care (difference in means 0.59, -0.72 to 1.89). Carers in the intervention group reported less abusive behaviour towards the recipient of care compared with those in the treatment as usual group (odds ratio 0.47, 95% confidence interval 0.18 to 1.23), although this was not significant.ConclusionsA manual based coping strategy was effective in reducing affective symptoms and case level depression in carers of family members with dementia. The carers' quality of life also improved.Trial registrationCurrent Controlled Trials ISCTRN70017938.

Project description:ObjectiveTo assess whether the START (STrAtegies for RelatTives) intervention added to treatment as usual is cost effective compared with usual treatment alone.DesignCost effectiveness analysis nested within a pragmatic randomised controlled trial.SettingThree mental health and one neurological outpatient dementia service in London and Essex, UK.ParticipantsFamily carers of people with dementia.InterventionEight session, manual based, coping intervention delivered by supervised psychology graduates to family carers of people with dementia added to usual treatment, compared with usual treatment alone.Primary outcome measuresCosts measured from a health and social care perspective were analysed alongside the Hospital Anxiety and Depression Scale total score (HADS-T) of affective symptoms and quality adjusted life years (QALYs) in cost effectiveness analyses over eight months from baseline.ResultsOf the 260 participants recruited to the study, 173 were randomised to the START intervention, and 87 to usual treatment alone. Mean HADS-T scores were lower in the intervention group than the usual treatment group over the 8 month evaluation period (mean difference -1.79 (95% CI -3.32 to -0.33)), indicating better outcomes associated with the START intervention. There was a small improvement in health related quality of life as measured by QALYs (0.03 (-0.01 to 0.08)). Costs were no different between the intervention and usual treatment groups (£252 (-28 to 565) higher for START group). The cost effectiveness calculations suggested that START had a greater than 99% chance of being cost effective compared with usual treatment alone at a willingness to pay threshold of £30,000 per QALY gained, and a high probability of cost effectiveness on the HADS-T measure.ConclusionsThe manual based coping intervention START, when added to treatment as usual, was cost effective compared with treatment as usual alone by reference to both outcome measures (affective symptoms for family carers, and carer based QALYs).Trial registrationISCTRN 70017938.

Project description:BackgroundThe third sector is becoming a growing provider of public, social, and health services. However, there is little evidence on the effectiveness of third sector organisations (TSOs), and their capacity to implement evidence-based interventions (EBIs). Understanding implementation aspects of service delivery remains an important issue in clinical practice, but is poorly understood in the context of TSOs. This is problematic, since implementation issues are known to be critical for effective intervention outcomes.ObjectivesTo identify and synthesise existing research on what barriers and facilitators influence the implementation process of TSOs delivering EBIs.MethodsThis review is reported according to PRISMA guidelines and was pre-registered in PROSPERO. Key databases were searched using relevant terms, experts in the field were contacted, and websites were reviewed. All identified studies were double-screened, and data were extracted independently by two authors. Included studies were synthesised using thematic analysis and were quality appraised.ResultsThirty-one studies were included, most of which were conducted in North America. The thematic synthesis identified resource limitations, in particular staff and finance, to be the most reported barrier to TSOs implementing EBIs. Organisational culture, including factors such as alignment between the mission of the TSO and EBI, and support/prioritisation of the implementation process were the most reported facilitators. These findings generalise across the included studies and are robust to study quality assessment.ConclusionsWhile it is often assumed that good outcomes follow when implementing interventions that have been developed and tested according to best practice, little attention has been paid to how EBIs are best transported, contextualised, and implemented by third sector providers. This systematic review found that TSOs faced considerable challenges in implementing EBIs, which were primarily a lack of support and expertise, and unclear/insufficient guidelines on how to adapt EBIs to different populations. To address these challenges, it is important to engage with central stakeholders, such as funders, researchers, policymakers, and practitioners, to discuss how these needs can be met.Trial registrationPROSPERO: CRD42017073090 .

Project description:BackgroundThe prevalence of dementia is increasing, and there are many associated problems that family members face as informal carers, including emotional, physical, and financial difficulties. There are benefits for a person with dementia to live at home for as long as possible, and therefore, supporting their informal carers is crucial. The growing interest in supporting carers through internet-based interventions is evidenced by the volume of systematic reviews on this topic. It is now appropriate to systematically examine this body of work and provide an overview of the literature.ObjectiveThis umbrella review aimed to identify the most effective internet-based intervention content and delivery method to support those caring for someone with dementia living in the community.MethodsPsycINFO, Web of Science, CINAHL, MEDLINE, Cochrane Library, and PubMed were searched for systematic reviews examining the effectiveness of web-based interventions for informal carers of people with dementia. A total of 3 reviewers extracted data and evaluated the quality of the papers. To ascertain the extent to which the systematic reviews reported on the same evidence, the proportion of overlap between their included studies was calculated. Qualitative research findings were extracted and reported.ResultsA total of 21 papers were included in the study. The quality of the review papers was mainly rated as low to moderate, and 10% (2/21) of papers were of high quality. The findings suggest that multicomponent interventions were the most effective in supporting carers. These included combinations of cognitive behavioral therapy and relaxation strategies, educational resources, and online support groups. Interventions that were delivered on the web but included sessions with a personal element, such as telephone contact, showed the best results. When comparing the studies reviewed in all the review papers, a moderate overlap was noted. However, when comparing individual reviews with each other, they showed a high overlap of the included studies.ConclusionsMixed delivery methods and intervention content showed the most effective results in supporting those caring for people with dementia. However, many papers do not separate the results for differing intervention contents or delivery; this needs to be considered when drawing conclusions. There was an overlap among the studies included in the reviews. This suggests a lack of current research on the effectiveness of web-based interventions for people caring for a person with dementia. There was also a lack of consistency in the outcome measures across all papers. Future studies can involve updating research on the effectiveness of these interventions while distinguishing between different intervention types, thus creating guidelines for the use of standardized measures to enable comparisons of intervention effects and improve the scientific quality of the overall research.Trial registrationPROSPERO CRD42021241559; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=241559.

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Implementation of START (STrAtegies for RelaTives) for dementia carers in the third sector: Widening access to evidence-based interventions.

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