IDEA intervention to prevent depressive symptoms and promote well-being in early-stage dementia: protocol for a randomised controlled feasibility study

OBJECTIVE: Depressive symptoms are common among people with dementia, impacting quality of life and cognitive and functional decline. Currently, little is known about the acceptability and feasibility of psychological interventions for people with mild dementia, with recent reviews identifying the need for further evidence. Developing and evaluating psychological interventions to prevent and treat these symptoms is, therefore, an important clinical and research priority. This protocol describes a study testing the acceptability and feasibility of a manual-based behavioural activation (BA) intervention for preventing and treating depressive symptoms in people with mild dementia. The aim of this study is to explore the feasibility of conducting a pragmatic multicentre randomised controlled trial of clinical effectiveness of an eight-session intervention. The Intervention to prevent Depressive symptoms and promote well-being in EArly-stage dementia (IDEA) programme supports people with dementia and their family carers in identifying and scheduling enjoyable and meaningful activities. METHODS AND ANALYSIS: Sixty people who have received a diagnosis of dementia of any type in the last 6 months will be recruited via memory clinics. Further criteria are a Mini-Mental State Examination score of ≥20, and a family carer who can assist with the intervention. Consenting participants will be randomised in a ratio of 2:1 to BA or to treatment as usual. Analyses will estimate parameters such as rates of recruitment, retention and number of sessions completed. Questionnaires measuring depressive symptoms and quality of life for both the person with dementia and their carer will be completed at baseline, 3 and 6 months. Qualitative interviews will explore acceptability of the intervention, study procedures and experiences of the sessions. ETHICS AND DISSEMINATION: This study received a favourable ethical opinion from the London Camberwell St Giles Research Ethics Committee (16/LO/0540). We will disseminate findings at key conferences, the Alzheimer’s Society and University College London websites and local stakeholder events. TRIAL REGISTRATION NUMBER: ISRCTN75503960; Pre-results

Minor and subthreshold depressive disorders in Alzheimer's disease: a systematic review and meta-analysis of prevalence studies

Background: Depressive symptoms are common in Alzheimer's disease (AD) and negatively impact patient well-being. The main aim of the present study was to establish summary estimates for the prevalence of minor depressive disorder (MinD) and subthreshold depression in AD and synthesise evidence on prognosis and management of these symptoms in order to inform clinical guidelines. / Methods: Systematic review and meta-analysis of cross-sectional and longitudinal studies of prevalence, prognosis, and treatments for minor and subthreshold depression in AD. We searched MEDLINE, Embase, PsycINFO and CINAHL. We included studies that reported prevalence of subthreshold depressive disorders and those reporting data on validity of diagnostic criteria, mechanisms, or randomised controlled clinical trials (RCTs) testing effectiveness of interventions. Estimates of prevalence were pooled using random-effects meta-analyses. Two authors screened articles and independently extracted data on study characteristics. / Results: We reviewed 5671 abstracts, retrieved 621 full text articles and included a total of 15 studies. Pooling data from 10 studies showed that prevalence for MinD in AD was 22.0% (95% CI 16.0 to 28.0). Prevalence for a clinical diagnosis of MinD (DSM-III-R and DSM-IV) was 26.0% (95% CI 20.0 to 32.0; 6 studies). People with MinD experienced higher levels of neuropsychiatric symptoms, functional and cognitive decline, although studies remain cross-sectional. Neither sertraline nor a carer intervention were effective in reducing symptoms. / Conclusion: This review finds that MinD is prevalent in people with a diagnosis of AD and requires clinical attention. Research is warranted to develop effective interventions to treat and prevent these symptoms

Supporting self-care of long-term conditions in people with dementia: A systematic review

BACKGROUND: Long-term conditions are common in people living with dementia; their self-management is an important determinant of wellbeing. Family carers often support or substitute self-care activities, and act as proxies for self-management, as dementia progresses. OBJECTIVES: To conduct the first systematic review of how management of long-term conditions in people with dementia is best enabled and supported, including factors that facilitate or inhibit self-management and management by a proxy. DESIGN: Systematic review. DATA SOURCES: We systematically searched MEDLINE, PsychINFO, Embase and Allied and Complementary Medicine databases up to November 2018. REVIEW METHODS: We identified the long-term conditions most prevalent in people with dementia that require an element of self-management. We then developed our inclusion criteria to identify qualitative and quantitative studies describing the self-management (or self-management assisted by family carers) of long-term conditions in people with dementia. Two authors independently rated study validity using a standardised checklist. We synthesised qualitative and quantitative findings using a data driven convergent synthesis approach. RESULTS: We included 12 articles meeting predetermined inclusion criteria: seven qualitative, two case studies, two quantitative and one mixed methods study. We identified four main themes across these studies: (1) dementia symptoms impeding treatment regimens (forgetfulness, decreased understanding, ability to communicate symptoms and behavioural and psychological symptoms); (2) adapting routines to be simpler, (using memory aids and accommodating physical limitations); (3) negotiating self-management support (carer availability and knowledge; balancing needs for safety and empowerment); and (4) interface with professionals, (Routine simplification, condition specific education, and acknowledging carer role). CONCLUSIONS: People living with dementia can be supported to manage their own health for as long as possible, through simplifying routines and reminding, but where this can no longer be negotiated, carers take over responsibility for self-management, often due to safety concerns. Empowerment of people with dementia to remain involved in their care reduces the loss experienced by this transition. Communication and partnership between clinicians and carers is critical when supporting people living with a long-term condition and dementia. Care planning for people living with dementia and a long-term condition should include explicit discussion of how these partnerships will work and guidance on strategies carers can use to support people to self-manage long-term conditions

Remote primary care consultations for people living with dementia during the COVID-19 pandemic: experiences of people living with dementia and their carers

BACKGROUND: COVID-19 has accelerated remote healthcare provision in primary care, with changes potentially permanent. The implementation of remote provision of healthcare needs to hear from vulnerable populations, such as people living with dementia. AIM: To understand the remote healthcare experiences of patients living with dementia and their family carers during the COVID-19 pandemic. DESIGN AND SETTING: Qualitative interviews with community-based patients living with dementia and their carers during early months (May-August 2020) of the COVID-19 pandemic in England. METHODS: Semi-structured interviews were conducted remotely by telephone or video call with 30 patients living with dementia and 31 carers. Data were analysed using thematic analysis. RESULTS: Three main themes were derived relating to: 1) proactive care at the onset of COVID-19 restrictions, 2) avoidance of healthcare settings and services, and 3) difficulties with remote healthcare encounters. People living with dementia and their carers felt check-up calls were reassuring but limited in scope and content. Some avoided healthcare services, wishing to minimise COVID-19 risk, reduce NHS burden, or encountering technological barriers. Difficulties in remote consultations included lack of prompts to remember problems, dealing with new emerging problems, rescheduling/missed calls, and inclusion of the person with dementia's voice. CONCLUSION: While remote consultations could be effective, pro-active calls could be more structured around needs, and consideration should be given to replace non-verbal prompts to describe problems, particularly for new health concerns. In continuing remote consultations, it is important to facilitate engagement with patients living with dementia and their carers to ensure best practice

Exploring how triads of people living with dementia, carers and health care professionals function in dementia health care: A systematic qualitative review and thematic synthesis

BACKGROUND: Many qualitative studies report the post-diagnostic care experiences of carers and people living with dementia; however, this is not often accompanied by opportunities to hear the corresponding views of their health care professionals and how this triadic relationship functions. The aim of this review was to identify and thematically synthesize the experiences of health care services reported by people living with dementia, their carers and health care professionals. METHODS: Medline, PsycINFO, Embase and CINAHL were searched from inception to 31 July 2019 for qualitative research including people living with dementia, carers and health care professionals. Data were coded and thematically synthesised using NVivo. RESULTS: Medline, PsycINFO, Embase and CINAHL were searched from inception to 31 July 2019 for qualitative research including people living with dementia, carers and health care professionals. Data were coded and thematically synthesised using NVivo. DISCUSSION: The interactions and complexity of triadic dementia care relationships further our understanding of how to improve dementia care. Awareness of possible diverging attitudes highlights areas of necessary improvement and further research into facilitating engagement, such as when multiple professionals are involved or where there are mismatched expectations of the roles of triad members. In order to operate efficiently as a triad member, professionals should be aware of how pre-existing relations can influence the composition of a triad, encourage the involvement of the person living with dementia, clarify the expectations of all parties, establish trusting relationships and enable communication within the direct triad and beyond

Development of a psychological intervention to promote meaningful activity in people living with mild dementia: an intervention mapping approach

Background and Objectives: Despite the importance of meaningful activity in mild dementia, only limited data are available on the development of interventions supporting people with mild dementia to engage in meaningful activity. In this article, we describe the development of an intervention that responds to this need. Research Design and Methods: Intervention mapping (IM), an evidence-based approach, was used to develop STAYING ACTIVE (STAYing well and active—schedulINg meaninGful and enjoyAble aCTIvities to promote Vitality and wEll-being in mild dementia). The first step, a needs assessment, comprised a literature review, focus groups, and individual interviews with service users. Performance objectives of the intervention were formulated in Step 2, followed by the development of theory-based methods in Step 3. In Step 4, the new intervention was developed based on data collected in previous steps, existing interventions, and pilot testing. Qualitative data were analyzed using framework analysis. Results: The needs assessment indicated that people with dementia and their carers view “staying active” as an important part of “enjoying life.” Adapting to loss through compensation and receiving support were key facilitators of engaging in meaningful activity. Ecological, psychosocial, and activity-oriented theories guided the development of theory-based intervention strategies, which were based on awareness, skills, and addressing barriers of meaningful activity. Discussion and Implications: STAYING ACTIVE is grounded on theory, and service user experiences and aims at promoting meaningful activity in mild dementia. The IM framework may be useful in the development of future psychosocial interventions for people with dementia, facilitating transparency when efficacy is evaluated

Health Care Professionals’ perspectives on self-management for people with Parkinson’s: qualitative findings from a UK study

Background: Parkinson’s disease is a long-term, complex health condition. To improve or maintain quality of life, people with Parkinson’s can have an active involvement in their care through self-management techniques. Given the complexity and individualization of self-management, people with Parkinson’s will need support and encouragement from their healthcare professionals (HCPs). Despite the key role HCPs have in this, research has seldom explored their perspectives and understanding of self-management for people with Parkinson’s. Methods: Multi-disciplinary teams providing care for people with Parkinson’s across London, Coventry and Hertfordshire were approached and took part in either one of four focus groups or individual interviews. Forty-two HCPs, including a range of specialist doctors, general practitioners, allied health professionals, nurses, and social workers, took part in this study. Interviews were transcribed and analysed using thematic analysis to identify themes. Results: Four themes were developed from the data: 1) Empowerment of patients through holistic care and being person-centred; 2) Maximising motivation and capability for patients, for example using asset based approaches and increasing opportunities; 3) importance of empowerment of carers to support selfmanagement and 4) contextual barriers to self-management such as the social context. Conclusions: This study is the first to explore the perspectives of HCPs on self-management in people with Parkinson’s. Our findings have identified important considerations surrounding empowerment, motivation, carers and contextual barriers to better understand how we enable effective selfmanagement techniques in people with Parkinson’s. Research should build on these findings on to develop acceptable and effective self-management tools for use in practice with people affected by Parkinson’s

Development and preliminary validation of the Meaningful and Enjoyable Activities Scale ( MEAS ) in mild dementia

Background Engaging in meaningful activity is an important contributor to well‐being in late life. This study aimed to develop a new measure of meaningful and enjoyable activities in people living with mild dementia. Methods The study consisted of four phases: (a) a review of measures of meaningful activity in older people; (b) interviews with people with dementia and their carers (n = 32), (c) expert opinion; and (d) feasibility testing in a pilot randomised controlled trial (n = 63). Results The development process resulted in a 20‐item questionnaire. The Meaningful and Enjoyable Activities Scale (MEAS) evidenced appropriate levels of internal consistency (α = .79). Higher scores correlated with higher functional independence (r = −.605, P < .001), patient (r = .330, P = .010) and carer‐rated patient quality of life (r = .505, P < .001). Multiple regression analyses showed that functional independence made a significant independent contribution in predicting higher levels of meaningful activity (F[7,45] = 6.75, P < .001, R2 = .512; β = −.444, P = .001). Confirmatory factor analysis indicated that a revised three‐factor 9‐item model provided good fit for the data (X2 = 22.74, P = .54, GFI = 0.93, RMSE = 0.00), with leisure‐time physical activity, social engagement and mentally stimulating activities as the key dimensions. Conclusion Our study provides support for the construct of meaningful activity in people with mild dementia. Although we find preliminary evidence that the MEAS has adequate psychometric properties, future large scale studies are required to test its validity further and responsiveness to change

Protocol for the feasibility and implementation study of a model of best practice in primary care led postdiagnostic dementia care: PriDem

INTRODUCTION: Care is often inadequate and poorly integrated after a dementia diagnosis. Research and policy highlight the unaffordability and unsustainability of specialist-led support, and instead suggest a task-shared model, led by primary care. This study is part of the PriDem primary care led postdiagnostic dementia care research programme and will assess delivery of an evidence-informed, primary care based, person-centred intervention. The intervention involves Clinical Dementia Leads (CDLs) working in primary care to develop effective dementia care systems that build workforce capacity and support teams to deliver tailored support to people living with dementia and their carers. METHODS AND ANALYSIS: This is a 15-month mixed-methods feasibility and implementation study, situated in four National Health Service (NHS) primary care networks in England. The primary outcome is adoption of personalised care planning by participating general practices, assessed through a patient records audit. Feasibility outcomes include recruitment and retention; appropriateness and acceptability of outcome measures; acceptability, feasibility and fidelity of intervention components. People living with dementia (n=80) and carers (n=66) will be recruited through participating general practices and will complete standardised measures of health and well-being. Participant service use data will be extracted from electronic medical records. A process evaluation will explore implementation barriers and facilitators through methods including semistructured interviews with people living with dementia, carers and professionals; observation of CDL engagement with practice staff; and a practice fidelity log. Process evaluation data will be analysed qualitatively using codebook thematic analysis, and quantitatively using descriptive statistics. Economic analysis will determine intervention cost-effectiveness. ETHICS AND DISSEMINATION: The study has received favourable ethical opinion from Wales REC4. NHS Confidentiality Advisory Group support allows researchers preconsent access to patient data. Results will inform intervention adaptations and a future large-scale evaluation. Dissemination through peer-review journals, engagement with policy-makers and conferences will inform recommendations for dementia services commissioning. TRIAL REGISTRATION NUMBER: ISRCTN11677384