Dementia is an umbrella term for progressive conditions affecting memory, thinking, communication and other cognitive functions. These changes can make social interaction challenging, particularly in unfamiliar or overstimulating environments. Although social interactions between staff and people living with dementia are recognised as an aspect of care, existing literature across health and social care settings largely focuses on general care needs and experiences rather than social interaction specifically. Consequently, there is limited understanding of the types of social interactions that occur and the contextual factors influencing them. This scoping review aims to address this gap by mapping existing research on social interactions between staff and people living with dementia in health and social care settings, to inform future research and care models. It addresses two questions: What types of social interactions take place between staff and people living with dementia? What barriers and facilitators influence these interactions? Searches were conducted across Social Policy and Practice, Medline, EMCare, Embase, Google Scholar, and the websites of the King's Fund and the World Health Organization, covering publications from 1997 to the present. Nineteen articles from eight countries met the inclusion criteria, with most employing qualitative methods. Five themes were identified: the nature of staff-resident social interactions; organisational care culture; organisational resources; the physical environment; and staff training and development. Findings highlight a notable gap in evidence relating to social interactions in clinically focused environments such as acute hospitals. Future research should examine how care contexts balance biomedical and psychosocial priorities, alongside the continued need for staff training in effective communication. Overall, the evidence indicates a necessary shift toward person centred organisational cultures that recognise social interaction as a core therapeutic component of dementia care.
Stigmatizing accounts of dementia emphasize tragedy, constructing people living with dementia as 'unagentic' and 'failed' aging subjects, and cognitive changes as a loss of self. This stigma has significant consequences for people living with dementia in all aspects of their lives. For example, coupled with the biomedical culture in many long-term care settings, recreation and leisure is often focused on targeting therapeutic goals or managing "difficult behaviours," rather than on life enrichment. A social citizenship framework challenges these deficit-based approaches by recognizing people living with dementia as active agents with rights, history, and capacities. Relational citizenship further highlights the importance of embodied selfhood and relationships to agency. Although leisure has the potential to support social and relational citizenship, existing research is focused almost exclusively on community-based settings, overlooking more communal institutional living, like long-term care facilities. This study addresses this gap by exploring how leisure shapes social and relational citizenship for people living with dementia living in long-term care settings. Participant observations of leisure programs and research conversations with both people living with dementia and recreation staff were conducted in a long-term care setting in Southern Ontario. Developed through reflexive thematic analysis, four stories reflect the complex relationship between leisure and social citizenship in long-term care contexts: Holding onto Selfhood, The Right to Choose, Beyond Isolation, and Negotiating Freedom and Care. These stories provide important insights into how long-term care environments can intentionally support residents' social and relational citizenship by prioritizing interdependence and relational agency, and by addressing the systemic and structural barriers that limit relational citizenship in long-term care.
Non-pharmacological interventions are widely recognised as essential components of dementia care. However, many cognitive activities lack cultural relevance and are difficult to integrate into everyday care practice. Design-driven approaches that emphasise cultural localisation and feasibility may offer an alternative pathway for meaningful engagement. To address this, this study employed a qualitative, practice-based design to develop and evaluate a culturally localised cognitive card-game intervention for older adults living with dementia. The intervention was implemented in routine care settings and examined through participant observation, staff interviews, and participation records, with data subsequently analysed thematically with a focus on engagement, social interaction, and feasibility. Three interrelated themes emerged from the analysis: (1) cultural familiarity as a catalyst for engagement, (2) social interaction and emotional expression through shared play, and (3) feasibility and adaptability within everyday care routines. Specifically, participants demonstrated sustained attention and active involvement, while care staff reported that the intervention was easy to use and compatible with existing practice. Cultural references embedded in the card content also appeared to facilitate communication and shared experiences among participants with varying cognitive abilities. These findings suggest that culturally localised cognitive materials can support meaningful engagement and social interaction in dementia care without relying on complex or resource-intensive interventions. By foregrounding cultural relevance and design feasibility, this study contributes to the growing body of non-pharmacological dementia research and highlights the value of design-driven approaches situated in real-world care contexts.
Although approaches exist to address challenges in supporting participation of people living with dementia in research, these approaches are rarely evaluated, a critical step to understand their influence on promoting the engagement of people with dementia as research participants. This study sought to examine the influence of verbally-prompted storytelling techniques for engaging people with dementia in qualitative interviews. Participants (n = 12) completed a series of interviews utilizing both traditional semi-structured interviewing techniques with direct questioning and verbally-prompted storytelling techniques. Responses in both interviews were analyzed and compared using qualitative content analysis to evaluate similarities and differences in the resulting data. Observational data were also collected and analyzed using the Engagement of a Person with Dementia Scale to assess the level of engagement in the two types of interviews. Results from the content analysis suggest that verbally-prompted storytelling techniques supported deeper and broader reflection of the impact of one's own experiences when compared to traditional semi-structured interviews. Storytelling techniques facilitated richer conversations when participants had difficulty recalling a personal example and enabled conversations about emotional topics. Despite these findings, the observed engagement scores across interview types were similar (p = 0.19). Qualitative results from this study suggest that verbally-prompted storytelling techniques influence data-elicited from qualitative interviews and thus serve as promising techniques to support deep responses during qualitative interviews for this population. These techniques may also be able to support improved communication for other purposes, such as during care conversations. Continued investigations into the application of these techniques in wider populations of people living with dementia and at different stages of their dementia journey will help to establish the usefulness of these techniques more broadly.
Background: Primary Progressive Aphasia (PPA) is a rare condition characterised by a gradual loss of language due to neurodegenerative processes including frontotemporal lobar degeneration and Alzheimer's disease. Speech and language therapy is one of the main treatment options for people with PPA (PwPPA). International survey studies among speech and language therapists (SLTs) have revealed considerable shortcomings in treatment options for this patient group. To date, there has been no survey on speech and language therapy for PwPPA in Germany. Methods: We translated a survey that was originally developed to describe speech and language therapy for PPA in the UK into German and adapted it to the German healthcare system. The final 32-item survey covering demographics of SLTs and PwPPA, referral patterns, as well as diagnostic and therapeutic procedures, was distributed online. Results: Data from 46 SLTs, from 10 of Germany's 16 federal states with experience in treating PwPPA were included. These 46 SLTs had treated 158 PwPPA in the last 24 months and reported working with PwPPA for >20 sessions on average. PwPPA were most frequently referred to speech and language therapy 2-3 years after symptom onset with word finding difficulties. Qualitative content analysis revealed barriers on multiple levels to access speech and language therapy. Informal assessments, including analysis of spontaneous speech, interviews with PwPPA and/or carers and screening of language and communication skills were reported as most frequently used. SLTs rated life story work, activity and participation-focused therapy and symptom-focused therapy. for language disorders as the most commonly used for PwPPA. Discussion: This study provides an overview of the current state of speech and language therapy for PwPPA in Germany. It shows that there is currently no clear pathway for PPA care that covers all levels of the International Classification of Functioning Disability and Health and encompasses both assessment and treatment approaches. A comparison of the results obtained from this survey study with those from other similar studies in the UK, Turkey and Italy revealed both similarities and differences. Our findings underscore the need for further research, the development of standardized, evidence-based assessment and intervention tools, and targeted professional training.
In this paper, we present the findings from a study of Voices in Motion, an intergenerational community choir program involving persons living with dementia, care partners, and high school students in Victoria, British Columbia, Canada. Using the concept of social capital, we examine the role Voices in Motion plays in generating trustworthy social relationships, reducing feelings of social isolation, and improving subjective well-being among choir members. Data came from interviews with 23 dyads, each consisting of a person living with dementia and their care partner; additionally, five focus groups with 29 high school students across two Voices in Motion choirs were conducted. Choir rehearsals and concerts were also observed. The study sought to identify factors in Voices in Motion that facilitate the emergence of supportive social relationships among choir members, the way members characterize the nature of these relationships, and the benefits they see in the context of everyday life. The analysis revealed that the two choirs in the Voices in Motion program served as a source of bonding social capital for persons living with dementia, care partners, and students. Care partners and persons living with dementia spoke of a sense of togetherness that united choir members as they shared a similar journey with dementia, along with a profound joy in singing and pride at performing at well-attended concerts and advocacy events. Care partners in particular saw Voices in Motion as a source of emotional support in the context of increasing caregiving burden, while students reported gaining a deeper understanding of the everyday experiences of dementia through their involvement in Voices in Motion.
Background: Hearing loss is a well-established modifiable risk factor for dementia at the individual level, but less is known about whether hearing loss prevalence aligns with dementia prevalence at the country level across diverse socioeconomic and demographic contexts. This study examined sex-stratified country-level associations between hearing loss prevalence and dementia prevalence, while avoiding causal interpretation of ecological associations. Methods: Country-level sex-specific prevalence estimates for hearing loss and dementia prevalence were obtained from the Global Burden of Disease data resources. Analyses were conducted separately for females and males and included descriptive sample summaries, Pearson and Spearman correlations, principal component analysis, partial correlations used as sequential robustness checks, and theory-informed multivariable linear regression. Variables were log10-transformed for the primary analyses. Models adjusted for economic development, urbanisation, the Henneberg Index, and sex-specific life expectancy at age 60. Formal sex comparison was evaluated using coefficient-comparison testing of the hearing-loss effect from comparable adjusted models. Results: The global bivariate association between hearing loss prevalence and dementia prevalence was strong in females (Pearson r = 0.827; Spearman rho = 0.845; p < 0.001) and males (Pearson r = 0.848; Spearman rho = 0.855; p < 0.001). Principal component analyses indicated that hearing loss prevalence clustered with socioeconomic and demographic indicators in both sexes, explaining more than 70% of total variance. In multivariable regression models, adding hearing loss increased explanatory power in females (R 2 from 0.661 to 0.827) and males (R 2 from 0.674 to 0.811). A formal coefficient-comparison test did not indicate a statistically meaningful difference between the female and male hearing-loss coefficients in the fully adjusted models (z = 0.82; p = 0.41). Conclusions: Hearing loss prevalence is strongly associated with dementia prevalence at the country level in both females and males after adjustment for macro-level socioeconomic and demographic covariates. The findings support the population-level relevance of hearing health for dementia surveillance and prevention, while indicating broad convergence rather than clear sex-based divergence in the hearing loss-dementia association.
Despite increasing dementia prevalence among minority ethnic populations in the UK, culturally appropriate post-diagnostic support remains limited. South Asian ethnic groups face distinct barriers in accessing care, including a lack of tailored arts, heritage, and cultural interventions that could support engagement, wellbeing, and social connection. This study explored how people living with dementia from South Asian ethnic groups and their carers in an ethnically diverse part of London, experience dementia services and perceive the potential value of creative health and culturally rooted approaches. Ten qualitative interviews were conducted with 22 participants (10 people living with dementia and 12 carers) of South Asian heritage, in 2024. Participants were recruited via community dementia services and included inpatients and outpatients aged 65-85, and carers aged 35-80. Interviews (40-90 min) explored experiences of dementia care, service access, and the role of arts, heritage, and cultural interventions. Reflexive thematic analysis was used to generate themes. Five key themes were identified: (1) Cultural Disconnect in Dementia Services; (2) Underuse of Cultural and Creative Resources; (3) Relational Continuity and Trust in Home-Based Dementia Services; (4) Gaps in Information and Dementia Healthcare System Navigation; and (5) Intersectional Barriers to Dementia Care Access. Participants described trusted relationships with home-based dementia teams, but strain in navigating wider care systems. Carers-particularly women-reported emotional exhaustion and limited capacity to engage with arts-based or cultural activities. Participants preferred culturally familiar, faith-sensitive, and home-delivered creative interventions. Dementia care for ethnically diverse groups must address the intersecting pressures of structural inequality, cultural identity, and caregiving. Co-produced, home-based arts and heritage interventions - embedded within trusted dementia care relationships - show promise in improving culturally relevant support. Embedding intersectionality and creativity in post-diagnostic dementia services can improve access, equity, and quality of life for both those with dementia and their carers.
When a diagnosis of dementia is made, both the individual and their family are confronted with a sudden influx of wide-ranging information. While intended to be supportive, this abundance of information can be overwhelming, and it is not clear which types are most beneficial for caregivers as they move into the care period that follows. This study examined which forms of informational support provided at the time of diagnosis are associated with reduced caregiver burden. In collaboration with dementia medical centers and certified dementia support doctors in Japan, we distributed questionnaires to family caregivers of people with dementia. A total of 159 self-administered questionnaires were returned. Caregiver burden was assessed using the short version of the Japanese Zarit Caregiving Inventory (J-ZBI_8). Regression analyses were conducted to evaluate the relationship between nine categories of information provided at diagnosis and caregiver burden, while adjusting for caregiver and care recipient characteristics as well as caregiving context. The results showed that only two types of informational support were significantly associated with a lower caregiver burden: information about dementia itself and information about local medical institutions. Other types of information, although often offered at diagnosis, did not demonstrate a measurable impact on caregiver stress. These findings underscore the importance of focusing on essential and practical information that directly helps families understand the disease and navigate available support systems. In conclusion, providing families with clear explanations about dementia and guidance on local medical resources may play a pivotal role in easing the challenges that follow diagnosis. By prioritizing these core informational needs, healthcare professionals can better support family caregivers, reduce stress, and foster more sustainable care environments in the community.
Korsakoff's syndrome (KS) is a neurocognitive disorder characterized by executive dysfunction, behavioral symptoms, and impaired awareness. In the Netherlands, people with KS and other alcohol-related brain disorders are cared for in specialized long-term care facilities (LTCFs). However, little is known about how formal caregivers working with people with KS in LTCF guide residents in daily practice. An ethnographic study was conducted over six months in two LTCFs. Using an apprenticeship-inspired approach, a partially participating researcher observed caregivers (nursing assistants, nurses and social workers) during work shifts, with informal interviews complementing observations. Through thematic analysis conducted by three researchers, three guiding patterns were identified. Behavior-centered guidance (1) aims to promote desired behavior through clear rules and direct communication. Caregivers following this approach value being firm and consistent as a way to support residents' independence and overall quality of life. Person-centered guidance (2) focuses on building connections through care by getting to know residents and working together with them. Caregivers in this pattern value attending to and understanding residents, treating them as individuals rather than defining them by their disease. Care-task-centered guidance (3) aims to keep things on track by prioritizing the completion of household and care tasks. Caregivers following this approach are practical and rational, adjusting their methods to prioritize task flow rather than resident interaction. Although caregivers had a preferred guiding pattern, they shifted between patterns depending on the resident and varying circumstances. These findings contribute to a deeper understanding of caregiving dynamics and offers opportunities for reflection and team development within LTCFs.
In the United States, home health care (HH) provides skilled nursing, therapy, and aide services delivered in patients' homes. One-third of HH patients have diagnosed dementia and these individuals rely heavily on support from family and unpaid caregivers during HH care. Yet, caregiving context is not systematically assessed in HH, presenting a barrier to high-quality care for patients with dementia. Partnering with a major HH agency, we developed a dementia caregiver assessment tool designed to fit within existing HH clinical workflows. We engaged HH administrators, frontline clinicians, and caregivers of HH patients with dementia in a participatory, user-centered approach to intervention development. This process included 3 stages leading to the final assessment instrument: (1) development, (2) refinement, and (3) content validity testing. Research activities included structured focus groups with HH clinicians (n = 18), recurring co-design workgroup with administrators and clinicians (n = 19), and cognitive interviews with clinicians (n = 10) and caregivers (n = 11). The final assessment tool includes 10 items across three domains: (1) "who" is helping the patient and "when" they are in the home (caregiver identity and availability), (2) "what" types of help they are providing (caregiving tasks), and (3) "how" they are coping (caregiver burden). The final assessment received a Scale-Content Validity Index score of 0.96 from clinicians and caregivers, indicating excellent content validity. This assessment instrument is now poised for evaluation within a "real-world" HH clinical context to assess its impact on care delivery and caregiver experiences.
Malaysia's rapid population aging has intensified the need for dementia care systems that extend beyond hospital-based services. This qualitative study explored the experiences and support needs of family caregivers of persons living with dementia (PLWD) in Malaysia, with the aim of informing dementia workforce development and para-professional training. Semi-structured interviews were conducted with 67 caregivers attending the geriatric unit of a public hospital in Selangor. Responses to open-ended questions on social support, emotional impact, communication with health professionals, economic consequences, and unmet needs were analyzed using structured qualitative content analysis, supported by a human-large language model (LLM) parallel coding approach. Caregivers described substantial emotional burden, including exhaustion, anxiety, social isolation, and feelings of being trapped in a continuous caregiving role. Many reported fragmented information from healthcare professionals, limited awareness of available welfare schemes, and inadequate access to respite, home-based support, and caregiver education. Caregiving also produced major financial strain through lost employment, reduced working hours, depleted savings, and recurring out-of-pocket costs. Across domains, caregivers expressed a strong need for affordable day care, home-based therapy, psychological support, financial assistance, and practical training. These findings indicate that dementia care in Malaysia remains heavily dependent on family caregivers who are expected to absorb unmet system demands with limited formal support. Strengthening the dementia care workforce through structured para-professional roles may help bridge gaps in caregiver education, welfare navigation, post-discharge support, and community-based care. The study underscores the need to align national aging and dementia policies with workforce development strategies that better support both persons living with dementia and the families who care for them.
This mixed-methods systematic review aims to synthesise current research to identify the risk and protective factors of wellbeing in the dementia social care workforce. Seven databases were searched in April 2024 for evidence published between January 2003 and April 2024, focusing on the risk and protective factors for wellbeing in the dementia social care workforce. Titles, abstracts and full text articles were screened by two reviewers. A deductive thematic analysis and narrative synthesis was performed on extracted data to reveal four themes. 5,237 qualitative and quantitative records regarding the dementia social care workforce in the UK were screened. 13 studies were included. Taking an ecological systems approach, risk and protective factors of wellbeing in the dementia social care were narratively synthesised into key themes including structural factors, interpersonal factors, personal attributes and factors generating a systemic sense of value. Our findings indicate that dementia social care workers experience many risk and protective factors to their wellbeing at multiple levels. Whilst these factors for wellbeing were categorised into themes, these often overlapped and should be considered together when addressing wellbeing in the dementia social care workforce. Therefore, a multisystem approach is required to fully address the wellbeing of the dementia social care workforce.
Dementia poses a threat to public health, especially among ethnically diverse Muslim communities in the UK, with quite some peculiar nuances. Within these communities, Black Muslims in the UK face unique risks shaped by complex ethnic, religious, and socioeconomic factors. However, there is a dearth of research that specifically explores perspectives on dementia in this population. The aim of this study was to explore and understand the perspectives of Black Muslims in the UK regarding the causes and prevention of dementia using a qualitative narrative inquiry approach guided by Intersectionality Theory and the Sociocultural Health Belief Model. The study involved 15 Black Muslims (8 women, 7 men), aged between 30 and 69 years, residing across the UK, with diverse roles including actively engaged community members (n = 6), religious figures (n = 3), and caregivers (n = 2). Data were collected through semi-structured interviews conducted virtually via Microsoft Teams. Thematic analysis was performed using an iterative approach with NVivo 14 software. The analysis yielded five major themes: (1) low awareness, misconceptions and stigma surrounding dementia; (2) faith-based health beliefs as protective factors; (3) stress, loneliness, and socioeconomic pressures as risk factors; (4) religious ideals, healthy lifestyles, and everyday realities; and (5) need for culturally tailored dementia education and engagement. Participants highlighted gaps between Islamic health principles, such as the encouragement of physical activity and their everyday practices, influenced by structural barriers. Black Muslims hold nuanced beliefs about dementia, shaped by cultural, religious, and socio-environmental factors such as stigma, limited awareness and socioeconomic pressures. These dynamics influence how dementia is understood and the extent to which preventive behaviours are adopted. Promoting dementia prevention in these communities requires culturally sensitive interventions that align with religious teachings, supported by policy changes that invest in community education and embed culturally and faith-informed approaches within public health strategies.
Behavioral and psychological symptoms of dementia are prevalent; however, there are no current interventions to manage these symptoms in the outpatient clinic setting. Animal-assisted interventions (AAI) have shown to be acceptable, non-pharmacological methods for symptom management in the clinic setting in other populations but have not been researched in dementia. This mixed-methods study investigated the feasibility and acceptability of an AAI for persons with dementia in the outpatient clinic setting. Data were collected from three groups of participants: (1) persons with dementia; (2) caregivers; and (3) health care providers. Ten persons with dementia engaged in an AAI, interacting with a therapy dog for at least 10 minutes before their appointment with a health care provider in a memory clinic. Persons with dementia and their caregivers completed follow-up Likert scale surveys and semi-structured telephone interviews; health care providers also completed follow-up Likert scale surveys. Telephone interviews were transcribed, and data were analyzed using qualitative thematic analysis. Descriptive results indicated that persons with dementia felt comfortable (100%) and happy (88.9%) interacting with therapy dogs. Caregivers also felt comfortable (100%) with the persons with dementia interacting with the therapy dog and reported that the interaction made the persons with dementia happy (90%). Neither persons with dementia, caregivers, nor health care providers reported the interaction as burdensome (100%). Four themes emerged from the qualitative thematic analysis: (1) baseline behaviors and feelings, (2) feelings towards opportunity, (3) positive interaction with dogs, and (4) positive overall experience at doctor appointments. Recruitment strategies were shown to be feasible, and the intervention was deemed safe. Conclusively, this study showed an AAI to be feasible and acceptable in the outpatient clinic setting for persons with dementia. Further research is required to determine the effects of an AAI on behavioral and psychological symptoms of dementia in the outpatient clinic setting.
Background: Informal dementia caregiving constitutes a substantial yet underrecognized form of work that places significant demands on family caregivers. Mexican American families, who experience disproportionate dementia burden and structural barriers to care, often rely on intensive family-based caregiving. While prior research has examined cultural values, stigma, and resource barriers separately, less attention has been paid to how these factors interact within a work system to shape caregiver burden. Objective: We characterized informal dementia caregiving among Mexican American families as work performed within a sociotechnical system, and examined how work system components interact to shape caregiver outcomes using the Systems Engineering Initiative for Patient Safety (SEIPS) 3.0 framework. Methods: We conducted semi-structured interviews with 15 Mexican American dementia caregivers in a U.S.-Mexico border community. Using constructivist grounded theory, we analyzed informal caregiving as work embedded within everyday contexts through the SEIPS 3.0 lens. Analysis examined interactions among person characteristics, caregiving tasks, organizational supports, tools and resources, and the broader cultural and linguistic environment. Findings: Caregiving labor was sustained by strong cultural commitment but its structure limited delegation and support access. Cultural beliefs framing care as a non-delegable family responsibility, stigma inhibiting disclosure, demanding physical and emotional labor, language barriers restricting organizational access, and uneven distribution of care within families collectively imposed burden on individual family members, most often daughters or wives. Caregivers actively sought information and resources, yet system-level barriers constrained utilization. These interacting conditions produced predictable outcomes: exhaustion, declining health, and burnout. Conclusions: Viewing dementia caregiving as work clarifies why relationally meaningful care becomes unsustainable without supportive systems. Caregiver burden emerges from interactions within the caregiving work system rather than isolated cultural or individual factors. This perspective highlights stigma reduction and language-concordant services as key intervention leverage points through system-level approaches that sustain family caregiving without relying on individual endurance.
Alzheimer's disease (AD) is the most common cause of dementia worldwide, yet awareness, diagnosis-seeking, and caregiving practices are strongly shaped by cultural and social contexts. Minority groups often face compounded barriers due to stigma, limited knowledge, and systemic inequalities. In Israel, a multicultural society, little is known about how non-professional community members from different minority groups perceive AD, seek diagnosis, and conceptualize appropriate care. We conducted a qualitative comparative study using six focus groups with 43 non-professional community members from three minority groups in Israel: Israeli Arabs (n = 14), immigrants from the Former Soviet Union (FSU; n = 15), and Ethiopia (n = 14). Discussions were conducted in Arabic, Russian, and Hebrew, audio-recorded, transcribed, and analyzed thematically. Three overarching themes emerged across groups: (1) Stigma: across all groups, participants demonstrated limited knowledge and misconceptions about AD, accompanied by stigmatizing stereotypes, fear, and behavioral responses such as social distancing, with variations in how stigma was expressed; (2) Diagnosis-seeking patterns: Participants from Arab community and Ethiopian descent reported delayed help-seeking linked to low awareness, stigma, and cultural or spiritual interpretations, whereas FSU participants more often emphasized consulting physicians, despite ongoing confusion between normal aging and AD; (3) Care preferences: Participants from Arab community and Ethiopian descent strongly preferred family-based home care, reflecting cultural and religious obligations, whereas FSU immigrants expressed greater support for institutional care, shaped by medicalized perceptions of dementia, their older age profile, and smaller family caregiving networks. The findings highlight both shared and culturally specific perceptions of AD among minority groups in Israel and demonstrate how stigma, diagnosis-seeking, and care preferences are closely interconnected. These insights underscore the need for culturally responsive public education, stigma-sensitive communication in primary care, and efforts to support earlier recognition and engagement with diagnostic services that account for diverse understandings of aging and dementia. At the system level, the findings point to the importance of targeted community outreach, culturally adapted information and interpretation services, and flexible care arrangements that better align formal dementia services with family-based caregiving norms across minority communities.
Touch-based therapies (massage, acupressure, reflexology/shiatsu, and therapeutic/healing touch) are used in dementia care, but effectiveness remains uncertain. The authors evaluated their impact on behavioural and psychological symptoms of dementia (BPSD) and pain, and extracted pragmatic "dose" and delivery parameters to inform a research blueprint. The authors searched major databases (MEDLINE, CINAHL, PsycINFO, Embase, CENTRAL) for studies from January 2005 to February 2023 involving people with any dementia aetiology/severity in community, residential, or inpatient settings. Eligible designs included randomised, quasi-experimental, and pre-post studies with a comparator (usual care, attention/quiet presence, or sham/light-touch). Data were extracted to a prespecified template; study quality was appraised using CASP tools. Owing to substantial clinical and methodological heterogeneity, the authors conducted a structured narrative synthesis as opposed to meta-analysis. Thirty-three studies met inclusion: 21 massage, 8 acupressure, 3 therapeutic/healing touch, and 2 reflexology/shiatsu. Most were in long-term care or inpatient settings. Interventions typically used brief, repeated sessions (5-20 minutes, several times per week for 2-6 weeks). The most consistent finding was short-term calming, particularly reductions in agitation immediately post-session or over brief treatment courses, with the clearest pattern for massage and acupressure. Effects on broader neuropsychiatric symptoms (e.g., NPI/NPI-NH domains) and pain were mixed. Where monitored, no serious adverse events were reported; minor transient issues (e.g., brief restlessness, skin sensitivity with aromatherapy oils) were infrequent and acceptability generally high. Risk of bias was mixed (≈49% low, 42% moderate, 9% high), and durability beyond 4-8 weeks was rarely assessed. Current evidence provides preliminary indications that brief, touch-based therapies may offer short-term calming effects when used alongside person-centred care, although certainty remains low and findings should be interpreted cautiously. The authors propose a pragmatic research blueprint that predefines session length, frequency, and course duration; uses attention/sham controls; adopts core outcomes (e.g., Cohen Mansfield Agitation Inventory (CMAI), Neuropsychiatric Inventory/Neuropsychiatric Inventory adapted for Nursing Homes (NPI/NPI-NH); Pain Assessment in Advanced Dementia (PAINAD) where relevant); ensures blinded assessment; and extends follow-up. The authors recommend that future work should prioritise feasibility/pilot studies, followed by adequately powered trials to determine effectiveness, durability, and scalability for practice.
Freedom of movement for people with dementia has received increasing attention in recent years, particularly in nursing homes. Nursing home residents' families play an important role in supporting their freedom of movement. Therefore, this qualitative study examines how families interpret and experience the freedom of movement of nursing home residents with dementia. Exploratory in-depth interviews were held with 13 family members of nursing home residents living with dementia. Data were analyzed thematically, starting with open coding and iterative refinement of codes. These codes led to the formulation of subthemes, which were clustered into five central themes: physical environments that support or hinder freedom, freedom is embedded in social contexts, value tensions in shaping perspectives on freedom, navigating unclear roles and responsibilities, and strategies for limited outdoor access. These central themes showed how family members interpret and experience freedom of movement in nursing homes for people with dementia. The findings underscore the complex and multifaceted nature of freedom of movement as families see it. Importantly, they suggest that nursing homes should actively involve families in shared decision-making and daily practices that balance freedom and safety to better support the quality of life of residents with dementia.
People with dementia can live alone successfully even when they do not have support from family or friends. This requires professionals to be able to provide timely and effective support. This study aims to identify professional perspectives on the challenges and strategies in supporting people with dementia who live alone and have no informal support. Semi-structured qualitative interviews were conducted with twenty-two professionals working in dementia-related roles across various sectors in England. Interviews were analysed using Reflexive Thematic Analysis. Themes were finalised through support of the study advisory team, including people with lived experience of dementia. Six themes were identified, reflecting stages of the 'dementia care pathway', from identification of patients to discharge. Professionals reported experiencing barriers around identifying clients, communicating with them, gathering information, engaging with them, managing risks, and setting up continuity of care. They shared strategies for each of these challenges. This study identified some key strategies that a variety of professionals can deploy to promote access and use of services for an especially vulnerable population to be able to live independently for as long as possible. These strategies would need to be embedded and consistently implemented across different sectors. This would ensure that people are identified and supported in a timely fashion and could, in turn, prevent more costly long-term care and contribute to cost-containment.
