Dementia

Optimising antipsychotic prescribing in people living with dementia is important to manage symptoms and avoid adverse events. Clinical decision support tools that predict therapeutic response based on individual patient characteristics can help personalise prescribing and complement decision-making by prescribers. The aim of this study is to investigate the views of Australian prescribers on the development and use of a digital antipsychotic prescribing support tool in dementia. Thematic analysis was used to analyse the perspectives of Australian prescribers on using a digital prescribing support tool in dementia. Semi-structured, individual interviews were conducted with a sample of 14 clinicians. Themes were organised according to topic areas about the development and use of the tool. Clinicians expressed that the tool could assist in identifying risk, allowing prescribers to be more cautious with antipsychotic prescribing. The tool could promote informed decision-making by assisting prescribers to consider more factors prior to prescribing whilst serving as an educational tool to aid shared decision-making with patients and carers. Though there were benefits, clinicians raised that there are complexities of antipsychotic prescribing, as the tool may not account for situational need, where benefits may outweigh risks. Some clinicians expressed potential concerns with technology-based tools, where some prescribers may void their clinical judgement and over-rely on the tool. Some clinicians highlighted younger practitioners, general practitioners, nurses and pharmacists as potential users who could benefit from its use. Clinicians posed suggestions for development, including accessibility through an app, updating data as evidence and guidelines change, and prompts to aid decision-making. This study identified several considerations on the implementation of the tool in clinical practice. Perspectives raised by clinicians should be considered in the tool’s future development.

In the Netherlands, where this study was conducted, there are around 800,000 family carers of people with dementia. Research into the needs and priorities of people with dementia and their family carers is crucial for developing tailored care and meaningful support. However, current research lacks attention to the everyday life experiences of caring for someone with dementia at home. Therefore, the research question this study aimed to address was: how do family carers of people with dementia living at home approach and experience their everyday life in a caring context? The study used a qualitative design, underpinned by a phenomenological approach. 15 family carers (10 partners and five adult children) participated in open interviews. Thematic analysis was used to document and structure the data. A member check was performed on the emergent findings through a focus group with six family carers (all care partners). This process resulted in four discrete but interlinked themes that reflected how family carers approach and experience caring at home for a person with dementia, namely: (1) Finding and keeping routines that work; (2) Focussing on small moments; (3) Rebalancing connections; and (4) Thinking ahead. These themes also emphasise the unfolding nature of everyday life that is constantly changing for family carers.

Background: Best healthcare practice for people with dementia encourages the inclusion of family members or carers, alongside enabling people with dementia to make their own decisions. Dementia care thus often includes the person with dementia, their carer, and their healthcare professional (HCP): a dementia care triad. Understanding how this triad is developed and navigated may improve future dementia care services. Methods: A longitudinal qualitative approach was used to interview 30 people with dementia, 31 family carers, and 7 healthcare professionals in England between May 2020 and March 2021. Data from three interview time points were transcribed and analysed using reflexive thematic analysis. Findings: The relationships within a dementia care triad were initially built on the dyadic relationship between the person with dementia and their family carer and any pre-existing relationships with their HCP. The nature and proximity of the carer to the person with dementia influenced how triadic relationships in dementia care formed and functioned, with spousal and co-resident carers more actively involved in healthcare interactions. Further positive development of a triad required confidence in the HCP, and shared perspectives on balancing the involvement of the carer and the independence of the person with dementia, with considerations of autonomy and risk, and which did not always follow a linear transition. While increased carer involvement often supported the person with dementia, it sometimes led to their exclusion. Engagement by healthcare professionals varied, reflecting inconsistencies in applying person-centred care. Conclusions: The findings of this study suggest a need for clearer, more consistent approaches that support dynamic carer roles while preserving the autonomy of the person with dementia. This study provides additional considerations in relationship dynamics that inform our understanding of the dementia care triad.

Individuals living with young onset dementia or mild cognitive impairment are typically working when cognitive decline emerges. Inability to maintain job demands can lead to loss of employment, loss of purpose and identity, financial instability, and withdrawal from social networks. The Job Demands and Accommodation Planning Tool was developed to identify workplace supports for individuals with episodic disabilities. The aim of this study was to explore the applicability of the Job Demands and Accommodation Planning Tool for individuals working with young onset dementia or mild cognitive impairment. Semi-structured interviews were conducted with 23 individuals: 11 in Canada, 7 in Finland and 5 in Sweden, where they described job demands and workplace challenges they faced. A secondary analysis of interview data was conducted using content analysis and a framework approach to code, categorize, and examine overlap with the Job Demands and Accommodations Planning Tool. Results showed that the Job Demands and Accommodation Planning Tool aligns well with the experiences of individuals living with young onset dementia or mild cognitive impairment. The Job Demands and Accommodation Planning Tool could inform workplace supports for people with young onset dementia or mild cognitive impairment to maintain their presence in the workforce.

Dementia is a cluster of disorders affecting a growing number of people around the world, with consequent disruption to the lives of those diagnosed and their loved ones. The impact of dementia on families has been widely documented; however, this is often done through the lens of caregiver burden. In contrast, the present research explores the wants and needs of couples living with dementia in terms of their shared leisure activities. Five Australians living with dementia and their partners participated in recorded semi-structured interviews. Thematic analysis of transcribed interviews produced four main themes and 15 subthemes highlighting this population’s needs and values regarding leisure. Themes included, “increased awareness of how dyads spend their time”, “awareness of dyadic changes within the relationship”, “appreciation of fulfilling moments”, and “person with dementia’s engagement/activity moderation and support by care partner”. The results support existing research including changes to relationship dynamics and lifestyle post-diagnosis. This research indicates the importance of leisure interventions that focus on improving socialisation for people with dementia and their partners and supports increased opportunities for quality time together.

Polypharmacy (taking five or more regular medications) is common in people with dementia or mild cognitive impairment (MCI) and is associated with poor outcomes such as decline in cognitive and physical functioning, falls and hospital admission. Reducing or stopping unnecessary medications (deprescribing) can help improve outcomes but limited research has been undertaken with people with dementia or MCI, especially in primary care. This study explored the perspectives and experiences of people with dementia or MCI, informal carers and healthcare professionals on deprescribing decision-making in this setting. Seven people with dementia, two people with MCI and nine informal carers took part in photo elicitation and an in-person interview. They took photographs of their day-to-day management of medication, which were used during the interview to probe the conversation. Sixteen healthcare professionals, including general practitioners, pharmacists, nurses, social prescribers and National Health Service memory clinic professionals, participated in individual online interviews. Data was analysed using inductive thematic analysis. Findings suggest the need to navigate ‘patient vs carer vs professional voices’ in the deprescribing process to ensure everyone’s voice is included. It should take into account patient cognitive abilities, autonomy and independence, as well as carer experiences and the need for a written summary of what has been discussed and agreed. Flexible, tailored, cross-system medication management processes are needed to support effective deprescribing, including proactive follow-up. To facilitate deprescribing discussions, factors such as professional knowledge, safe environment, and sufficient time should be considered. Finally, careful consideration should be given to the potential impact of deprescribing decisions on day-to-day medication management and carer burden. These findings provide novel insights that demonstrate the need for a relationship-centred approach for deprescribing for people with dementia or MCI, which should inform future research on development of a primary care deprescribing intervention for this group of people.

Background: Research shows a link between quality of care and quality of life in people with dementia, but potential differences between men and women remain unexplored. This study examined gender differences in types of care received, the quality of care and quality of life of people with dementia in the Netherlands. Gender differences were explored in the relation between quality of care and quality of life. Methods: Cross-sectional survey data were used of 449 people with dementia living in the Netherlands. Types of care were analysed with descriptive statistics and non-parametric tests. Perceived quality of care and quality of life were measured on a ten-point scale. Gender was analysed as a moderator in the quality of care–quality of life association using regression analysis. Included background characteristics were age and living situation. Results: More women received home care, while group meetings were more common among men. Quality of care ratings were similar for men (7.6) and women (7.5), indicating fair to good care. The average quality of life was slightly lower for women (6.9) than for men (7.1; b = −.251; p < .05). A higher quality of care was associated with a higher quality of life (b = .373; p < .05). The association between quality of care and quality of life was independent of the gender (b = −.035; p > .05). Conclusions: Men and women with dementia who were cognitively able to complete the survey differed in the types of care they received. On average, the respondents perceived the quality of care as fair to good. Quality of life was rated as fair, slightly higher for men. A higher quality of care was associated with a higher quality of life. Future studies should explore gender differences in family care and compare men and women receiving similar care.

The World Health Organization’s iSupport for Dementia program provides an online platform for carer education, yet its suitability for culturally and linguistically diverse communities remains under explored. This study evaluated the cultural and linguistic appropriateness of the adapted Vietnamese iSupport program for carers in Australia and identified factors influencing the future implementation of an iSupport Virtual Assistant (iSupport VA). A qualitative descriptive study was conducted using five focus group discussions with 30 participants, including 18 family carers and 12 formal carers from Vietnamese communities in Australia. Thematic analysis, guided by a deductive-then-inductive approach, was applied to analyse the data. Discussions were conducted in Vietnamese, recorded, transcribed, translated, and systematically coded for recurring themes. The findings showed that participants emphasized the need for culturally sensitive language and visual representation in the adapted iSupport program, stressing the necessity for translations that align with context, incorporate relatable examples, and feature realistic video content. They expressed a strong preference for accessible multimedia formats, favouring video content with voice-over and interactive features over text-heavy materials, particularly for those with limited literacy. The importance of culturally tailored caregiving scenarios was highlighted, with a preference for real actors over animated characters to enhance emotional authenticity. Despite recognising the program’s value in improving caregiving skills, carers cited time constraints, competing responsibilities, and digital literacy challenges as barriers to engagement, emphasising the need for a clear value proposition and targeted support mechanisms, including introductory tutorials and peer-based community interaction. Adapting iSupport to align with cultural and linguistic needs enhances its relevance and accessibility for Vietnamese carers in Australia. Refining translations, incorporating culturally familiar multimedia elements, and addressing usability concerns are crucial to optimising engagement and effectiveness.

The psychological health and quality of life (QoL) of family caregivers, who are central to care provision for older adults, may be impacted by the diagnosis of dementia in their care-recipients. However, the relevant literature is largely limited to qualitative studies or Western contexts. Using longitudinal quantitative data from Singapore, a rapidly ageing Asian nation, we assess the change in family caregivers’ depressive symptoms and QoL following the diagnosis of dementia in their older care-recipients. Data of 263 caregivers and their care-recipients (≥75 years with functional limitations) was extracted from a four-wave longitudinal study. Based on caregivers’ report if the care-recipient had been ‘ever diagnosed’ (at baseline interview) or ‘diagnosed since previous interview’ (in follow-up interviews) with dementia, the sample was grouped into: (1) new diagnosis (n = 22), (2) existing diagnosis (n = 57) and (3) not diagnosed (n = 184). Caregiver depressive symptoms (Center for Epidemiologic Studies-Depression scale) and QoL (World Health Organization QoL scale; four domains: physical health, psychological health, social relationships, and environmental health) were measured at each wave. Across the three dementia diagnosis groups, caregivers in the ‘new diagnosis’ group had the highest depressive symptoms and lowest QoL (physical and psychological health domains) at their last available follow-up interview. Multivariable fixed-effect regression showed that caregivers exhibited a significant decline in QoL (psychological and environmental domains) following their care-recipients’ diagnosis of dementia. The detrimental psychological impact of the diagnosis of dementia in their care-recipients on family caregivers is also observed in Asian settings. Our findings emphasize the importance of support mechanisms for caregivers adapting to the diagnosis of dementia in their loved ones.

Understanding a person’s life story can transform dementia care by promoting a person-centered approach. Documented life stories help staff to personalize care, but further research is needed to understand their construction and usage in care practice. The aim of this study was to explore assistant nurses’ experiences of life story documentation and their practical applications in dementia care practice. Five semi-structured focus groups were conducted, and data were analyzed using qualitative content analysis. The findings consisted of five themes: “Ensuring timing and accessibility when constructing a documented life story,” “Recognizing template limitations in capturing a comprehensive view of the person,” “Refining life story quality and understanding through ongoing dialogues,” “Building connection and support through insights from documented life stories,” and “Harmonizing life histories with evolving care needs in practice.” Our findings highlight the importance of a dynamic and inclusive approach to life story documentation that goes beyond rigid templates. Accessible and well-documented life stories can empower nursing staff to provide responsive and personalized care, enhancing the dignity and quality of life of people living with dementia.

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.

Objectives: Behavioural and psychological symptoms of dementia (BPSD) are prevalent in residential aged care (RAC) settings, negatively impacting residents’ quality of life and increasing carer burden. This study investigated current practices and experiences of RAC staff in managing BPSD, including collaborative behaviour support planning with family members. Methods: A cross-sectional survey was conducted with 43 RAC staff supporting residents with dementia. Data was collected about demographics, resident characteristics, and current behaviour support practices and support needs. Quantitative and qualitative data were analysed using descriptive statistics and thematic analysis respectively. Results: Despite the prevalence of written behaviour support plans, their perceived usefulness and staff involvement in their development were inconsistent. Collaboration with family members is valued but often limited by factors such as time constraints and communication difficulties. Staff identified a need for increased training and additional resources to provide effective behaviour support. Conclusion: This study highlights the need for improved training and support for RAC staff in managing BPSD, and a practice framework that clarifies roles and responsibilities across behaviour support service systems. Further research is needed to inform evidence-based behavioural interventions in RAC settings, with emphasis on collaborative practices that support best outcomes for residents with dementia.

People with dementia often experience psychological distress, and may experience difficulty in navigating changes to their cognition, identity and quality of life, yet experience challenges in accessing and engaging in talking therapies. This study aims to conduct a systematic review and thematic meta-synthesis to explore the experiences of people with dementia in accessing talking therapies by incorporating the perspectives of people with dementia, caregivers and dementia care professionals. We searched PsychINFO, CINAHL and Web of Science in March 2024 and included empirical peer reviewed studies that had qualitative data focussing on accessing, delivering or participating in talking therapies, from the perspective or people with dementia, their caregivers, or professionals. Only English language studies were included. 15 studies were included. Across the studies, qualitative data was collected from 88 people with dementia, 96 caregivers/family members/supportive others, 38 professionals and seven community stakeholders. Quality assessment was conducted using a revised version of the Critical Appraisal Skills Programme checklist for qualitative research. Talking therapies can help people with dementia to address, process, and accept difficult life situations, whilst also improving their knowledge on dementia and positively impacting their relationships with significant others. However, to maximise benefits, several adjustments are necessary, including, adjusting the length of therapy sessions, increased therapy reminders and follow-up, tailored communication, use of group sessions and improving staff’s dementia knowledge. Additionally, the use of dementia-specific tools, alongside outcome measures that measure broader wellbeing constructs are recommended. Involving people with dementia, caregivers and dementia professionals in therapy planning and delivery can also improve outcomes. Talking therapies for people with dementia are effective, though adaptations to address their unique support needs are essential. Several studies explored multicomponent interventions, making it difficult to ascertain which specific elements of psychological intervention were most effective. Additionally, individuals from ethnically diverse backgrounds were consistently underrepresented across the studies.