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.

Transitions and challenges for people with Parkinson's and their family members: A qualitative study.

OBJECTIVE: To explore the experiences and challenges of people with Parkinson's and their family members living in the community through the lens of their transitions to better understand the phases and changes in their lives. DESIGN: Qualitative study using semi-structured interviews and analysed using codebook thematic analysis. SETTING/PARTICIPANTS: Purposive sampling was used in primary and secondary healthcare services across Southern England in 2019 to recruit 21 people with Parkinson's (aged between 45-89 years) and 17 family members (13 spouses and 4 adult children, aged between 26-79 years). RESULTS: Participants' descriptions were classified in three main phases of transition from a place of health towards greater dependency on others: 1) 'Being told you are a person with Parkinson's' (early), 2) 'Living with Parkinson's' (mid), and 3) 'Increasing dependency' (decline). Seven sub-themes were identified to describe the transitions within these three phases: phase 1: receiving and accepting a diagnosis; navigating reactions; phase 2: changing social interactions and maintaining sense of self; information: wanting to know but not wanting to know; finding a place within the healthcare system; and 3: changes in roles and relationships; and increasingly dependent. CONCLUSION: This study has identified points of change and means of supporting key transitions such as diagnosis, changes in social connections, and increased use of secondary healthcare services so that comprehensive, holistic, individualised and well-timed support can be put in place to maintain well-being.

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 self-management 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 self-management 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.

Life under lockdown and social restrictions - the experiences of people living with dementia and their carers during the COVID-19 pandemic in England.

BACKGROUND: The impact of COVID-19 restrictions on people living with dementia and their carers is an emerging focus of recent research determining how we can best support this population. People living with dementia have faced service curtailment, increased risk for COVID-19, as well as potential heightened deterioration. This study reports the experiences of people living with dementia and their family carers during the early months of the COVID-19 pandemic in England and the impact on them. METHODS: We recruited and remotely interviewed 30 people living with dementia in their own homes and 31 family carers, via video or telephone call in mid-2020. Data were transcribed and analysed using thematic analysis. RESULTS: People living with dementia often had a basic understanding of COVID-19 restrictions but could have difficulty translating this into personalised risk-appraisal of their own actions. Managing COVID-19 risks facing people living with dementia at home was largely done by family carers, exemplified by changes to living arrangements, which could strain or sustain caring relationships. Well-established familial caring relationships contributed to the wellbeing of the person living with dementia and their carer, as well as keeping to simple routines that included leaving the home for exercise and stimulation. People living with dementia reported some negative psychological and cognitive effects due to the imposed restrictions, such as increased apathy, irritability, or anxiety, which were fuelled by lack of social engagement. CONCLUSIONS: Structuring routine (remote) social interactions where possible could increase social engagement and improve wellbeing for people living with dementia, especially those with limited familial support in a post-COVID-19 context. As some care relationships had been restructured to manage COVID-19 risks, additional carer strain may emerge as a result of the impact on the independence of the person living with dementia and come to the attention of professionals in health and care services. People living with dementia and their carers highlighted the importance of maintaining or adapting routines which may be useful learning for professionals, although additional support may be necessary for those who are impacted by more severe or worsening symptoms of dementia.

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 health care needs to be informed by 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 were carried out between May-August 2020, while the COVID-19 pandemic was ongoing in England. METHOD: 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: proactive care at the onset of COVID-19 restrictions; avoidance of healthcare settings and services; and 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 or reduce NHS burden, or encountering technological barriers. Difficulties in remote consultations included lack of prompts to remember problems, dealing with new emerging difficulties, rescheduling/missed calls, and inclusion of the voice of the person with dementia. CONCLUSION: While remote consultations could be effective, proactive calls could be more structured around needs. 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 good 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: Of 10,045 search results, 29 papers relating to 27 studies were included in the final synthesis, including 261 people living with dementia, 444 carers and 530 health care professionals. Six themes emerged related to the functioning of a dementia care triad: (1) involving the person living with dementia, (2) establishing expectations of care and the roles of the members of the triad, (3) building trust, (4) effective communication, (5) continuity of care and (6) understanding the unique relationship dynamics within each triad. 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.

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.

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; ß = -.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.

Supporting nutrition in frail older people: a qualitative study exploring views of primary care and community health professionals.

BACKGROUND: Malnutrition is associated with increased morbidity and mortality, and is very common in frail older people. However, little is known about how weight loss in frail older people can be managed in primary care. AIMS: To explore the views and practices of primary care and community professionals on the management of malnutrition in frail older people; identify components of potential primary care-based interventions for this group; and identify training and support required to deliver such interventions. DESIGN AND SETTING: Qualitative study in primary care and community settings. METHOD: Seven focus groups and an additional interview were conducted with general practice teams, frailty multidisciplinary teams (MDTs), and community dietitians in London and Hertfordshire, UK (n = 60 participants). Data were analysed using thematic analysis. RESULTS: Primary care and community health professionals perceived malnutrition as a multifaceted problem. There was an agreement that there is a gap in care provided for malnutrition in the community. However, there were conflicting views regarding professional accountability. Challenges commonly reported by primary care professionals included overwhelming workload and lack of training in nutrition. Community MDT professionals and dietitians thought that an intervention to tackle malnutrition would be best placed in primary care and suggested opportunistic screening interventions. Education was an essential part of any intervention, complemented by social, emotional, and/or practical support for frailer or socially isolated older people. CONCLUSIONS: Future interventions should include a multifaceted approach. Education tailored to the needs of older people, carers, and healthcare professionals is a necessary component of any intervention.

Self-Management Components as Experienced by People with Parkinson's Disease and Their Carers: A Systematic Review and Synthesis of the Qualitative Literature.

BACKGROUND: Self-management strategies are important in healthcare for people with Parkinson's to improve daily living. There is limited evidence on effectiveness in Parkinson's, and the active components of effective self-management strategies are uncertain. This review aims to identify and synthesise the qualitative evidence regarding the experiences of self-management components by people with Parkinson's and their carers. METHODS: MEDLINE, PsycINFO, Embase, Web of Science, and CINAHL were searched from inception to July 8, 2020, for qualitative research concerning self-management for people with Parkinson's. Data were coded and thematically synthesised using NVivo. Findings. Of 9547 search results, six papers were included in the final thematic synthesis. The studies reviewed consisted of 147 participants: 104 were people with Parkinson's and 43 were carers. Seven main themes were derived concerning self-management of people with Parkinson's: (1) medication management, (2) physical exercise, (3) self-monitoring techniques, (4) psychological strategies, (5) maintaining independence, (6) encouraging social engagement, and (7) providing knowledge and information. These components should be incorporated as relevant strategies and techniques and should be specific as well as tailored to different stages of the disease. Discussion. Self-management programmes for people with Parkinson's should include the seven themes presented as part of this review and pay particular attention to presenting relevant information and skills as they relate to different stages of the disease. Tailoring information and social engagement were two components that required specific attention in order to engage people with Parkinson's effectively.

Are We There Yet? Immersive Virtual Reality to Improve Cognitive Function in Dementia and Mild Cognitive Impairment.

BACKGROUND AND OBJECTIVES: Cognitive training therapies may delay cognitive deterioration in dementia. There is potential to enhance delivery through immersive virtual reality (IVR), as removing potential distractors for cognitively impaired individuals can enhance their experience, resulting in increased engagement. Evidence in this field is emerging and not yet synthesized. We aimed to summarize research investigating the use of IVR in dementia to evaluate the current extent of use, acceptability, feasibility, and potential effectiveness. We also aimed to identify gaps in current research and to create a set of recommendations in utilizing this therapy. RESEARCH DESIGN AND METHODS: A systematic literature review was conducted. Our review was registered with PROSPERO, registration number: CRD42019122295. We undertook searches of five databases, article references, and citations. Key authors in the field of health care VR were also contacted to identify additional papers. Articles were assessed for inclusion by two researchers independently. Data were extracted using standardized forms. RESULTS: Our search identified a total of 2,824 citations, following screening for duplicates and application of inclusion and exclusion criteria, five studies were included for analysis. Included studies were heterogeneous, with small sample sizes and mixed outcomes. DISCUSSION AND IMPLICATIONS: We were unable to reach definitive conclusions over the use, acceptability, and effectiveness of IVR for dementia and mild cognitive impairment. Future studies should focus on ensuring their interventions are truly immersive, developing more robust controls and account for the rapid rate of obsolescence in digital technologies.

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.

Behavioral Activation for Promoting Well-Being in Mild Dementia: Feasibility and Outcomes of a Pilot Randomized Controlled Trial.

Engaging in meaningful and enjoyable activities is an important contributor to well-being and maintaining good quality of life. There is a paucity of randomized controlled trials of interventions supporting people with mild dementia to engage in meaningful and purposeful activity. The aim of this study was to assess whether Behavioral Activation (BA) is an acceptable psychological intervention for people with mild dementia and whether a large-scale trial is feasible. Participants were randomly assigned to BA (n = 42) or treatment as usual (TAU) (n = 21). BA aimed at increasing engagement in enjoyable and meaningful activity, and preventing low mood. Follow-up was at 3 and 6 months. Assessors were blind to treatment allocation (trial registration number: ISRCTN75503960). Retention rate was above 80% at both assessment time points. Treatment acceptability and credibility were high. Depressive symptoms remained unchanged in both groups. There was evidence of improvement associated with BA for every day function (-3.92, 95% Confidence Interval (CI) -6.87 to -0.97), and engagement in meaningful and enjoyable activity (5.08, 95% CI 0.99 to 9.16) post-treatment (3 months) in comparison to TAU. Both carer-rated patient health-related quality of life (0.16, 95% CI 0.04 to 0.28) and physical health (11.31, 95% CI 2.03 to 20.59) showed evidence of improvement at 3 months. Improvements in meaningful and enjoyable activity were maintained at 6 months.BA for people with mild dementia is feasible and acceptable and may be associated with clinically significant changes in function and quality of life. A full scale randomized controlled trial of clinical effectiveness is now needed.

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.