Improving Conversations about Parkinson's Dementia.

BACKGROUND: People with Parkinson's disease (PD) have an increased risk of dementia, yet patients and clinicians frequently avoid talking about it due to associated stigma, and the perception that "nothing can be done about it". However, open conversations about PD dementia may allow people with the condition to access treatment and support, and may increase participation in research aimed at understanding PD dementia. OBJECTIVES: To co-produce information resources for patients and healthcare professionals to improve conversations about PD dementia. METHODS: We worked with people with PD, engagement experts, artists, and a PD charity to open up these conversations. 34 participants (16 PD; 6 PD dementia; 1 Parkinsonism, 11 caregivers) attended creative workshops to examine fears about PD dementia and develop information resources. 25 PD experts contributed to the resources. RESULTS: While most people with PD (70%) and caregivers (81%) shared worries about cognitive changes prior to the workshops, only 38% and 30%, respectively, had raised these concerns with a healthcare professional. 91% of people with PD and 73% of caregivers agreed that PD clinicians should ask about cognitive changes routinely through direct questions and perform cognitive tests at clinic appointments. We used insights from the creative workshops, and input from a network of PD experts to co-develop two open-access resources: one for people with PD and their families, and one for healthcare professionals. CONCLUSION: Using artistic and creative workshops, co-learning and striving for diverse voices, we co-produced relevant resources for a wider audience to improve conversations about PD dementia.

Tailoring STrAtegies for RelaTives for Black and South Asian dementia family carers in the United Kingdom: A mixed methods study.

OBJECTIVES: We culturally adapted STrAtegies for RelaTives (START), a clinically and cost-effective intervention for dementia family carers, for Black and South Asian families. It had previously been delivered to family carers around the time of diagnosis, when most people with dementia had very mild, mild or moderate dementia. METHODS: We interviewed a maximum variation sample of family carers (phase one; n = 15 South Asian; n = 11 Black) about what aspect of START, required cultural adaptation, then analysed it thematically using the Cultural Treatment Adaptation Framework then adapted it in English and into Urdu. Facilitators then delivered START individually to carers (phase two; n = 13 South Asian; n = 8 Black). We assessed acceptability and feasibility through the number of sessions attended, score for fidelity to the intervention and interviewing family carers about their experiences. We used the Hospital Anxiety and Depression Scale. to examine whether immediate changes in family carers' mental health were in line with previous studies. RESULTS: In phase one we made adaptations to peripheral elements of START, clarifying language, increasing illustrative vignettes numbers, emphasising privacy and the facilitator's cultural competence and making images ethnically diverse. In phase two 21 family carers consented to receive the adapted intervention; 12 completed ≥5/8 sessions; four completed fewer sessions and five never started. Baseline HADS score (n = 21) was 14.4 (SD = 9.8) but for those who we were able to follow up was 12.3 (SD 8.1) and immediately post-intervention was 11.3 (n = 10; SD = 6.1). Family carers were positive about the adapted START and continued to use elements after the intervention. CONCLUSIONS: Culturally adapted START was acceptable and feasible in South Asian and Black UK-based family carers and changes in mental health were in line with those in the original clinical trial. Our study shows that culturally inclusive START was also acceptable. Changes made in adaptations were relevant to all populations. We now use the adapted version for all family carers irrespective of ethnicity.

Empathy as a crucial skill in disrupting disparities in global brain health.

Brain health refers to the state of a person's brain function across various domains, including cognitive, behavioral and motor functions. Healthy brains are associated with better individual health, increased creativity, and enhanced productivity. A person's brain health is intricately connected to personal, social and environmental factors. Racial, ethnic, and social disparities affect brain health and on the global scale these disparities within and between regions present a hurdle to brain health. To overcome global disparities, greater collaboration between practitioners and healthcare providers and the people they serve is essential. This requires cultural humility driven by empathy. Empathy is a core prosocial value, a cognitive-emotional skill that helps us understand ourselves and others. This position paper aims to provide an overview of the vital roles of empathy, cooperation, and interdisciplinary partnerships. By consciously integrating this understanding in practice, leaders can better position themselves to address the diverse challenges faced by communities, promote inclusivity in policies and practices, and further more equitable solutions to the problem of global brain health.

How do person-centered outcome measures enable shared decision-making for people with dementia and family carers?-A systematic review.

Objectives: To identify published evidence on person-centered outcome measures (PCOMs) used in dementia care and to explore how PCOMs facilitate shared decision-making and improve outcomes of care. To build a logic model based on the findings, depicting linkages with PCOM impact mechanisms and care outcomes. Design: Mixed-methods systematic review. We searched PsycINFO, MEDLINE, CINAHL, and ASSIA from databases and included studies reporting experiences and/or impact of PCOM use among people with dementia, family carers, and/or practitioners. Groen Van de Ven's model of collaborative deliberation informed the elements of shared decision-making in dementia care in the abstraction, analysis, and interpretation of data. Data were narratively synthesized to develop the logic model. Setting: Studies were conducted in long-term care, mixed settings, emergency department, general primary care, and geriatric clinics. Participants: A total of 1064 participants were included in the review. Results: Ten studies were included. PCOMs can facilitate shared decision-making through "knowing the person," "identifying problems, priorities for care and treatment and goal setting," "evaluating decisions", and "implementation considerations for PCOM use." Weak evidence on the impact of PCOMs to improve communication between individuals and practitioners, physical function, and activities of daily living. Conclusions: PCOMs can enable shared decision-making and impact outcomes through facilitating collaborative working between the person's network of family and practitioners to identify and manage symptoms and concerns. The constructed logic model demonstrates the key mechanisms to discuss priorities for care and treatment, and to evaluate decisions and outcomes. A future area of research is training for family carers to use PCOMs with practitioners.

A Review of Qualitative Research of Perception and Experiences of Dementia Among Adults From Black, African, and Caribbean Background: What and Whom Are We Researching?

BACKGROUND AND OBJECTIVES: Black, African, and Caribbean (BAC) families are disproportionately affected by dementia but engage less with services. Studies reporting their experiences of dementia have tended to aggregate people from diverse backgrounds, without considering the impact of this diversity, or researchers' ethnicities. We investigated participants' and researchers' ethnic identities, exploring how this relates to findings. RESEARCH DESIGN AND METHODS: We searched electronic databases in September 2018, for qualitative studies exploring how participants of Black ethnicity understand and experience dementia and dementia care. We reported participants' and researchers' ethnicities, and meta-synthesized qualitative findings regarding how ethnicity influences experiences and understanding of dementia. RESULTS: Twenty-eight papers reported 25 studies; in United States (n = 17), United Kingdom (n = 7), and Netherlands (n = 1). 350/492 (71%) of participants were in U.S. studies and described as African American; participants in U.K. studies as Caribbean (n = 45), African/Caribbean (n = 44), African (n = 28), Black British (n = 7), or Indo-Caribbean (n = 1); and in Netherlands as Surinamese Creole (n = 17). 6/25 (24%) of studies reported involving recruiters/interviewers matching participants' ethnicity; and 14/25 (56%) involved an author/advisor from a BAC background during analysis/procedures. We identified four themes: Dementia does not relate to me; Inappropriate and disrespectful services; Kinship and responsibility; Importance of religion. DISCUSSION AND IMPLICATIONS: Studies were mostly from a U.S. African American perspective, by researchers who were not of BAC background. Themes of dementia diagnosis and services feeling less relevant to participants than the majority population resonated across studies. We caution against the racialization of these findings, which can apply to many differing minority groups.

"Falling through the cracks"; Stakeholders' views around the concept and diagnosis of mild cognitive impairment and their understanding of dementia prevention.

OBJECTIVES: Many people live with an awareness of mild cognitive changes that increase their dementia risk. Previous authors describe the uncertainties of this liminal state, between cognitive health and dementia, where being "at risk" can itself be an illness. We ask how services respond to people with memory concerns currently, and how a future, effective and inclusive dementia prevention intervention might be structured for people with memory concerns. METHODS/DESIGN: We conducted qualitative interviews with 18 people aged 60+ years with subjective or objective memory problems, six family members, 10 health and social care professionals and 11 third sector workers. Interviews were audio-recorded, transcribed and analysed using an inductive thematic approach. RESULTS: Three main themes were identified: (1) acknowledging the liminal state, compounded by current, discordant health service responses: medicalising memory concerns yet situating responsibilities for their management with patients and families; (2) enabling change in challenging contexts of physical and cognitive frailty and social disengagement and (3) building on existing values, cultures and routines. CONCLUSIONS: Effective dementia prevention must empower individuals to make lifestyle changes within challenging contexts. Programmes must be evidence based yet sufficiently flexible to allow new activities to be fitted into people's current lives; and mindful of the risks of pathologising memory concerns. Most current memory services are neither commissioned, financially or clinically resourced to support people with memory concerns without dementia. Effective, large scale dementia prevention will require a broad societal response.

The IDEMCare Study-Improving Dementia Care in Black African and Caribbean Groups: A feasibility cluster randomised controlled trial.

OBJECTIVE: We evaluated the feasibility and acceptability of a tailored evidence-based intervention, consisting of a leaflet and a letter, to encourage timely help-seeking for dementia in Black elders. METHODS: Participating GP surgeries were randomised to send either the intervention or a control leaflet about ageing well to Black patients aged ≥50 years old without known dementia. We interviewed patients 2 weeks later about the intervention's acceptability using closed and open-ended questions, and they completed a Theory-of-Planned-behaviour questionnaire about what they would do if they developed memory problems, which they also completed 4 months later. RESULTS: Five of 26 surgeries approached agreed to invite patients. Sixty-five patients responded, of whom 61 (93.8%) agreed to participate. At 2 weeks, we consented and interviewed 47/61 (77%), of whom 24 received the intervention, and at 4 months we followed up 43/47 (91.5%). At 2 weeks, 44/47 (93.6%) found either intervention acceptable to receive by post, including 23/24 of the intervention. Nineteen of 24 (79.2%) reported reading the intervention leaflet compared with 13/23 (56.5%) controls. The intervention leaflet made 16/24 (66.7%) think about visiting their doctor for memory problems and led 4 to help-seeking behaviour. We calculated that 191 patients and 24 surgeries are required for an efficacy trial. CONCLUSIONS: Given the intervention is acceptable, inexpensive, and unlikely to cause harm, we judge it appropriate to disseminate it without a full-scale trial. Recruitment attainment, retention, and projected sample size calculation indicated feasibility for a larger trial.

Black African and Caribbean British Communities' Perceptions of Memory Problems: "We Don't Do Dementia.".

OBJECTIVES: We aimed to identify and explore the barriers to help-seeking for memory problems, specifically within UK Black African and Caribbean communities. METHOD: We purposively recruited participants from community groups and subsequent snowball sampling, to achieve a maximum variation sample and employed thematic analysis. Our qualitative semi-structured interviews used a vignette portraying a person with symptoms of dementia, and we asked what they or their family should do. We stopped recruiting when no new themes were arising. RESULTS AND SIGNIFICANCE: We recruited 50 people from a range of age groups, country of origin, time in the UK, religion and socio-economic background. Some of the barriers to presentation with dementia have been reported before, but others were specific to this group and newly identified. Many people recognised forgetfulness but neither that it could be indicative of dementia, nor the concept of dementia as applying to them. Dementia was viewed as a white person's illness. Participants felt there was little point in consulting a doctor for forgetfulness. Many thought that seeing a GP was only for severe problems. Some said that their culture was secretive and highly valued privacy of personal affairs and therefore did not want to discuss what they regarded as a private and stigmatising problem with a GP. Participants did not appreciate their GP could refer to memory services who have more time and expertise. They were concerned about harm from medication and compulsory institutionalisation. Care should be from the family. Any intervention should emphasise the legitimacy of seeing a doctor early for memory concerns, that dementia is a physical illness which also occurs in the Black community, that help and time are available from memory services whose role is to prolong independence and support families in caring.