Dementia Care Research Articles

Balancing sleeping with guardianship: narratives of sleep during informal dementia care

Sleep has been recognised as compromised in dementia care. This study aims to represent the experiences and needs of informal carers via sleep-related accounts. Retrospective interviews were conducted with 20 carers concerning sleep changes across the trajectory of dementia care. Key interactive narratives were around: ‘sleep as my sacrifice’; tensions between identities of being a ‘sleeper’ versus ‘guardian’; and ‘sleep as a luxury’. Maintaining healthy sleep and preferable sleep practices is challenging while balancing the responsibilities of dementia-related care. Acknowledging sleep as a sociological practice enables a greater understanding of carers’ nuanced experience and support needs.

Association between grip strength and electrical properties measured by bioimpedance spectroscopy in women with dementia aged 77 to 97 years living in group homes.

Electrical properties estimated from the electrical resistance of the human body can serve as indicators of muscle tissue status and the risk of developing sarcopenia; however, to date, at least to the best of our knowledge, no studies have performed such an assessment in older individuals with advanced dementia. The present study examined the associations between grip strength, body composition and electrical properties using bioimpedance spectroscopy (BIS) in women aged 77-97 years residing in dementia group homes. A total of 33 participants were enrolled with an average age of 88.1±5.2 years; 57.6% of the participants had moderate or severe dementia. The resistance values of the participants were measured in the whole body, upper limbs and lower limbs using BIS, and their body composition, muscle mass index and electrical properties were estimated as indicators of muscle quality. In addition, grip strength was measured and the participants were classified into three groups (high, low and non-measurable) according to their cognitive function. The effect size (partial eta-squared and Cohen's d) was also evaluated. The Shapiro-Wilk test was used to assess the distribution of each variable; variables with non-normal distributions were analyzed following log transformation. Continuous variables were analyzed using a one-way analysis of variance and the Tukey-Kramer post hoc test was used. The post hoc sample size (statistical power: 1-β) analysis revealed a power of ~80% (i.e., 76.1-88.7%), considering the minimum power for sufficient participants. No differences were found in body composition or muscle mass index among the three grip strength groups. As regards the upper limbs, the electrical properties of the characteristic frequencies were significant (P=0.006; effect size, large), and the membrane capacitance (P=0.005; effect size, large) was significantly higher in the high-dose group than in the other groups. A significant association was detected among grip strength, upper limb characteristic frequency and membrane capacitance. Hence, electrical properties may be an indicator of muscle quality in older women identified as needing care for dementia.

Doing dementia differently: A range of co-produced resources from the IDEAL programme

This article introduces different free resources for people with dementia, carers and professionals working within dementia care. All were produced as part of the IDEAL research programme, drawing on the wealth of evidence created as part of this large cohort longitudinal study. Explaining the background, the creation process and where to find each resource, the article directs readers towards resources readily available for use, as well as information about forthcoming resources.Four ready-to-use resources are described in detail. The Living with Dementia Toolkit is a comprehensive suite of resources for people with dementia and carers. It also features lots of different people with dementia and carers sharing their stories in their own words. The Toolkit is being widely used in NHS and third-sector settings, as well as by community groups. My Life Questionnaire is a new measure of living well which was co-produced with people living with mild-to-moderate dementia and scientifically validated with the IDEAL cohort. ‘The World Turned Upside Down’ began as a play and became a documentary film which can be used to raise awareness, promote discussion and within educational or continuing professional development settings. ‘The Bridge’ is an opera about the experience of living with dementia through the diagnostic process and how a husband and wife manage following diagnosis. Both artistic productions involved people with lived experience advising the performers on how to portray dementia authentically.

Co-design of the EMBED-Care Framework as an intervention to enhance shared decision-making for people affected by dementia and practitioners, comprising holistic assessment, linked with clinical decision support tools: A qualitative study.

Shared decision-making intends to align care provision with individuals' preferences. However, the involvement of people living with dementia in decision-making about their care varies. We aimed to co-design the EMBED-Care Framework, to enhance shared decision-making between people affected by dementia and practitioners. A theory and evidence driven co-design study was conducted, using iterative workshops, informed by a theoretical model of shared decision-making and the EMBED-Care Framework (the intervention) for person-centred holistic palliative dementia care. The intervention incorporates a holistic outcome measure for assessment and review, linked with clinical decision-support tools to support shared decision-making. We drew on the Medical Research Council (MRC) guidance for developing and evaluating complex interventions. Participants included people with dementia of any type, current or bereaved family carers and practitioners. We recruited via established dementia groups and research and clinical networks. Data were analysed using reflexive thematic analysis to explore how and when the intervention could enhance communication and shared decision-making, and the requirements for use, presented as a logic model. Five co-design workshops were undertaken with participants comprising people affected by dementia (n = 18) and practitioners (n = 36). Three themes were generated, comprising: (1) 'knowing the person and personalisation of care', involving the person with dementia and/or family carer identifying the needs of the person using a holistic assessment. (2) 'engaging and considering the perspectives of all involved in decision-making' required listening to the person and the family to understand their priorities, and to manage multiple preferences. (3) 'Training and support activities' to use the Framework through use of animated videos to convey information, such as to understand the outcome measure used to assess symptoms. The intervention developed sought to enhance shared decision-making with individuals affected by dementia and practitioners, through increased shared knowledge of individual priorities and choices for care and treatment. The workshops generated understanding to manage disagreements in determining priorities. Practitioners require face-to-face training on the intervention, and on communication to manage sensitive conversations about symptoms, care and treatment with individuals and their family. The findings informed the construction of a logic model to illustrate how the intervention is intended to work.

Clinical and cost-effectiveness of DREAMS START (Dementia RElAted Manual for Sleep; STrAtegies for RelaTives) for people living with dementia and their carers: a study protocol for a parallel multicentre randomised controlled trial

IntroductionMany people living with dementia experience sleep disturbance and there are no known effective treatments. Non-pharmacological treatment options should be the first-line sleep management. For family carers, relatives’ sleep disturbance...

Adult Day Care Service: Who Uses it and Who Wants to Use it? Multivariable Analysis of Current and Future Use of Adult Day Care Service by Elderly Persons in Long-Term Care

Background Adult day care serves to ease the burden on informal caregivers and to provide adequate care and support for care recipients. Across Bavaria and Germany, adult day care is attended by 4% of all care recipients. The aim of the secondary analysis was to identify variables linked to the current or desired future use of adult day care services. Methodology For the cross-sectional study Benefits of Being a Caregiver ("Zugewinne durch die Pflege"), informal caregivers of geriatric care receiver were surveyed in Bavaria from October 2019 to March 2020 (age>65; n=958). Data regarding caregiving situation, characteristics of informal caregivers and care recipients, and sociodemographic information were collected. Two binary logistic regression analyses were conducted to identify predictors of current or desired adult day care service use. Results Adult day care was used by 7.3% (n=70) of informal caregivers. Utilization was associated with dementia and high care degree requirements of the care recipient(Nagelkerke's R2 = 0.200). Of the 888 informal caregivers not using adult day care services, 223 (25.1%) expressed a desire to use them. This was associated with care recipients suffering from dementia, a poor previous relationship, and a high subjective burden on the informal caregiver (Nagelkerke's R²=0.083). Conclusion The utilization rate of adult day care was found to be higher than reported in Bavarian or German care statistics. Dementia and an increased need for care of the care recipient were associated with utilization, but contrary to reports in literature, no association with everyday limitations, sex, education, or duration of care was found. More than two-thirds of Bavarian informal caregivers do not want to use adult day care services either now or in the future.

In constant search of the good: a qualitative study into insiders' perspectives on living well with dementia.

The new concept of 'living well with dementia' is currently gaining traction in practice, policy, and research. However, people with dementia and their carers' own understanding of this concept has not received much scholarly attention. This is because empirical studies into living well with dementia are predominantly quantitative; there are only a few qualitative studies on this topic. This study therefore sets out to investigate what living well means for 'insiders' in an everyday context. To explore insiders' own perspectives on living well with dementia, we conducted interviews and focus group discussions with 21 dementia stakeholders. The study included ten individuals with mild-to-moderate dementia living at home, five family carers who are or have been involved in the care for a person with dementia, and six health and social care professionals. Living well with dementia, for our study participants, revolves around shaping their daily lives according to their values. In this sense, living well with dementia is no different than without. As it involves the values of the person with dementia and those of their social network, living well is both an individual and a collective concern. Having dementia undermines people with dementia's ability to substantiate their values, but it is still possible to live well. As they attempt to shape living well with dementia, respondents encounter tensions within the social network and within the person with dementia. To handle these tensions, they work for mutual attunement by using sensitivity and switching between leading and following in social interactions. Living well with dementia in a daily context is a dynamic process in which people with dementia, family carers, and professionals constantly seek the good together. This insight contributes to a better understanding of stakeholders' ongoing, invisible efforts to mutually attune. It may also help bypass dichotomizing approaches to dementia. Finally, it opens up new venues for research into reciprocity in the care collective. The article closes with recommendations to improve dementia care and support in light of these findings.

Nursing Home Characteristics Associated with Antipsychotic Prescribing After Implementation of the National Antipsychotic Reduction Initiative (ARI).

To describe nursing home (NH) characteristics associated with antipsychotic use and test whether associations changed after implementation of the National Partnership to Improve Dementia Care's antipsychotic reduction initiative (ARI). Longitudinal quasi-experimental design using data from multiple sources and piecewise linear mixed models were used for statistical analyses. There was a significant decrease in monthly antipsychotic use across the study period (pre-ARI b=-0.0003, p<.001; post-ARI b=-0.0012, p<.001), which held after adjusting for NH characteristics. Registered nurse hours (b=-0.0026, p<.001), licensed practical nurse hours (b=-0.0019, p<.001), facility chain membership (b=-0.0013, p<.01), and health inspection ratings (b=-0.0003, p>.01) were associated with decreased antipsychotic use. Post-ARI changes in associations between NH characteristics and antipsychotic use were small and not statistically significant. Decreases in antipsychotic use were associated with most NH characteristics, and associations persisted post-ARI. Further research is warranted to examine the interactions between ARI policy and NH characteristics on antipsychotic prescribing, as well as other NH factors, such as facility prescribing cultures and clinical specialty of staff. Decreases in monthly antipsychotic use were observed following the ARI. The decreases in monthly antipsychotic use were associated with most NH characteristics, and these associations persisted during the post-ARI period.

Hospital admissions for dementia in the Brazilian public health system over the last decade.

The rise in dementia prevalence, particularly in lower- and middle-income countries (LMIC), places a significant burden on healthcare systems. However, comprehensive data on dementia hospital admissions are scarce. We analyzed admission rates for dementia, cost of hospital admissions, lengths of hospital stay, and in-hospital deaths in 2010 and 2019 in Brazil. Admission rates declined from 19.7/100,000 inhabitants in 2010 to 14.6/100,000 in 2019. In-hospital mortality increased from 3.9% in 2010 to 8.8% in 2019, particularly for short-term stays. Although 9.6% of hospital admissions occurred in regions with lower economic power in 2010 and 10.4% in 2019, these regions had higher mortality, reaching 4.3% of in-hospital deaths in 2010 and 9.3% in 2019. The observed trends, alongside sex and regional disparities, underscore the need for targeted investment in healthcare infrastructure and training to improve dementia care in LMIC. The rate of hospital admissions for dementia was similar in 2010 and 2019 in Brazil.The cost per hospital admission in 2010 decreased by 38.5% compared with 2019.There was an increase in short-term hospital stays for dementia in 2019 compared to 2010, accompanied by an increase in mortality rates for these short-term stays.While hospital admissions for dementia decreased in men and increased in women, the in-hospital mortality due to dementia increased for both sexes.

Person-centred support plans and staff wellbeing innovations for in-patient dementia care: A service development project

Comprehensive person-centred support plans are completed for all people living with dementia admitted to Holbrook ward, a dementia specialist unit in the Oxleas NHS Foundation Trust. However, staff have faced barriers in using these effectively for person-centred care due to the demanding and busy nature of the ward environment. It has also been challenging for new, bank, and agency staff to find time to read about and understand the person living with dementia, leading to escalation in situations which could have been avoided. In collaboration with nursing staff, the psychology team developed support plan flash cards that serve the purpose of being a ‘grab and go’ style resource. These are targeted at individuals with more complex presentations and used during handovers and when staff are on one-to-one observations, providing a useful snippet of information about the person living with dementia. The psychology team also developed a wellbeing support plan for staff, with tips for keeping well and supporting their own mental health and wellbeing.

Best Practices for Communicating a Diagnosis of Dementia: Results of a Multi-Stakeholder Modified Delphi Consensus Process.

Many individuals with dementia and their families report not receiving a dementia diagnosis. Previously published standards for delivering a dementia diagnosis are now more than 10 years old and were developed without patient and caregiver input. The objective of this study was to identify best practices for delivering a diagnosis of dementia using existing literature, involvement of diverse stakeholders, and consensus building through a formal modified Delphi approach. We convened a multi-stakeholder working group including a patient, caregivers, Alzheimer's Association staff, and clinicians from diverse backgrounds. The panel used the American Academy of Neurology process for recommendation development, consisting of a half-day workshop and 3 rounds of anonymous modified Delphi voting to achieve consensus. The working group convened from May 2022 through January 2023. The group chose to focus statements on a limited number of best practices that can be applied across clinic types. Seven best practice statements achieved consensus after a maximum of 3 rounds of voting. These included the following: (1) Clinicians must show compassion and empathy when delivering a diagnosis of dementia (level A). During dementia diagnosis disclosure, clinicians should (2) ask regarding diagnosis preferences, (3) instill realistic hope, (4) provide practical strategies, (5) provide education and connections to high-quality resources, (6) connect caregivers to support resources, and (7) provide written summaries of the diagnoses, plan, and relevant resources (each level B). Clinicians need to customize discussion of a dementia diagnosis for individual patients and their caregivers. These 7 best practices provide a diagnosis communication framework that can be implemented across varied clinical settings. Additional strategies, such as using optimal general communication approaches, are also important for dementia diagnosis discussions. Thoughtful application of these best practices is particularly important when caring for individuals from underrepresented communities. Further improving communication regarding dementia diagnoses will require health system changes (e.g., for sufficient time), improved access to specialty dementia care, and clinician training for delivering difficult diagnoses. More research is needed to identify culturally sensitive approaches to discussing dementia diagnoses.

Supporting care homes with behaviour that challenges: A psychosocial approach

The Greenwich and Bexley dementia Care Home Team is a novel test-and-learn service designed to upskill care home staff and support residents living with dementia with behaviours that challenge. Clinical outcomes and qualitative feedback suggest a positive impact on care home staffs’ self-efficacy in the application of biopsychosocial approaches in reducing or understanding behaviours that challenge. Limitations and future directions are discussed.

Technology in Dementia Education: An Ethical Imperative in a Digitized World.

Technology can support the delivery of care and improve the lives of people living with dementia. However, despite a substantial body of evidence demonstrating the benefits and opportunities afforded by technology, gaps remain in how technology and technology ethics are addressed in dementia care education. Here we discuss disparities in current educational programming and highlight the ethical challenges arising from underdeveloped knowledge exchange about dementia care technology. We put forward that for technology to be ethically deployed and maximized to improve outcomes, it must be embedded into dementia education programs and made widely accessible to the caregiver community.

A preliminary study on the development of care staff's Final-Stage Decision-Making Support Scale for older adults with dementia.

This preliminary study aimed to develop a care staff Final Life-Stage Decision-Making Support Scale (FS-DM) for older adults with dementia (OwDs) in geriatric facilities. The FS-DM items were developed from focus group interviews with care staff and reviewed through discussions with several experts in dementia care. A questionnaire survey was conducted among care staff in geriatric facilities from February to March 2021. In total, 138 carers (110 [79.7%] women and 28 [20.3%] men, mean age: 41.5 ± 2.3 years) participated. Among them, 91 (65.9%) were professional caregivers, and 36 (26.1%) were nurses. The FS-DM was developed using a factor analysis, which resulted in 11 items grouped into three factors', as it is the three factors: (1) support for the realization of the wills of OwDs in their final life-stages through collaboration with families and multiple professionals; (2) consideration of communication regarding the formation and expression of the wills of OwDs in their final life-stages; and (3) support for eliciting the wills of OwDs during their final life-stages according to their decision-making ability and values. The factor loadings ranged from 0.385 to 0.827, and the accumulated contribution ratio was 61.03%. The reliability analysis yielded a Cronbach's α of 0.740-0.855. The first and second factors of the FS-DM were significantly correlated with the Approaches to Dementia Questionnaire item "Nurses' attitudes towards support for decision-making." Our results suggest that the FS-DM could provide supportive care for OwDs to formulate, express, and realize their will, and that it has a degree of reliability and validity. Geriatr Gerontol Int 2024; 24: 130-134.

Scaling-up an evidence-based intervention for family carers of people with dementia: Current and future costs and outcomes.

The STrAtegies for RelaTives (START) intervention is effective and cost-effective in supporting family carers of people with dementia. It is currently not available to all eligible carers in England. What would be the impacts on service costs and carer health-related quality of life if START was provided to all eligible carers in England, currently and in future? Effectiveness and cost-effectiveness data from a previously conducted randomised controlled trial were combined with current and future projections of numbers of people with newly diagnosed dementia to estimate overall and component costs and health-related quality of life outcomes between 2015 (base year for projections) and 2040. Scaling-up START requires investments increasing annually but would lead to significant savings in health and social care costs. Family carers of people with dementia would experience improvements in mental health and quality of life, with clinical effects lasting at least 6years. Scaling up the START intervention to eligible carers was estimated to cost £9.4 million in 2020, but these costs would lead to annual savings of £68 million, and total annual quality-adjusted life year (QALY) gains of 1247. Although the costs of START would increase to £19.8 million in 2040, savings would rise to £142.7 million and Quality adjusted life years gained to 1883. Scaling-up START for family carers of people with dementia in England would improve the lives of family carers and reduce public sector costs. Family carers play a vital part in dementia care; evidence-based interventions that help them to maintain this role, such as START, should be available across the country.

Walking the talk for dementia: A unique immersive, embodied, and multi-experiential initiative.

Coping with dementia requires an integrated approach encompassing personal, health, research, and community domains. Here we describe "Walking the Talk for Dementia," an immersive initiative aimed at empowering people with dementia, enhancing dementia understanding, and inspiring collaborations. This initiative involved 300 participants from 25 nationalities, including people with dementia, care partners, clinicians, policymakers, researchers, and advocates for a 4-day, 40km walk through the Camino de Santiago de Compostela, Spain.A 2-day symposium after the journey provided novel transdisciplinary and horizontal structures, deconstructing traditional hierarchies.The innovation of this initiative lies in its ability to merge a physical experience with knowledge exchange fordiversifying individuals' understanding of dementia.It showcases the transformative potential of an immersive, embodied, and multi-experiential approach to address the complexities of dementia collaboratively. The initiative offers a scalable model to enhance understanding, decrease stigma, and promote more comprehensive and empathetic dementia care and research.

Towards inclusiveness in dementia services for black and minoritised communities in the UK

Purpose The purpose of this paper is twofold: to explore the existing evidence around dementia services and interrogate the overarching UK policy development relating to service inclusion of black and minoritised groups. The paper will go on to identify the implications for the dementia wellness pathway and make recommendations regarding how services can be more inclusive. Design/methodology/approach This paper examines the policy/practice landscape around dementia care provision and observes if lessons can be learnt to improve health outcomes for people living with dementia from black and minoritised communities. Findings A review of dementia policy demonstrates how opportunities to improve the awareness, diagnosis and post-diagnostic support for minoritised communities are being missed. The outcomes of this mean that individuals are denied vital treatment and support, which could enhance quality of life and delay the progression of dementia. Practical implications The authors’ premise is that not meeting the dementia support needs of less-heard communities has negative financial as well as social and health-related outcomes and has wider resonance and implications for all stages of the dementia wellness pathway. Moreover, there is a legal responsibility for public services to provide culturally sensitive, responsive, appropriate and available care, to all people, without discrimination. Originality/value This paper offers a valuable review of policy and practice around dementia care in the UK and makes recommendations to improve health outcomes for people living with dementia from black and minoritised communities.

Role of occupational therapy in person-centred dementia care: Exploring family member and clinician perceptions.

This study aimed to explore the role of occupational therapy in dementia facilities using a person-centred model of care, from the perspective of family members, occupational therapists and multidisciplinary health professionals. A descriptive qualitative approach was adopted, and all data were evaluated using thematic analysis. Semi-structured interviews were completed with eight family members and five multidisciplinary health professionals. Four occupational therapists practising in dementia care also provided qualitative data via an online survey. The analysis identified two key themes around perceptions of occupational therapy in person-centred dementia care. These themes were (1) the poorly defined scope of the occupational therapy role and (2) the perceived features of the occupational therapy role. While the perceptions and experiences of participants varied, the scope of this role is currently poorly defined. Occupational therapists in this setting commonly facilitate positive social interaction and present-oriented occupational engagement with residents and are also recognised as building workforce capacity with multidisciplinary colleagues. Without a clearly defined scope of practice, the role of occupational therapy in enabling health and well-being for people with dementia cannot be coherently articulated. This could lead to underutilisation of occupational therapy services, and lost opportunities for residents to experience improved health and well-being.

Nurturing Attentiveness: A Naturalistic Observation Study of Personal Care Interactions Between People With Advanced Dementia and Their Caregivers.

Personal care interactions can provide vital opportunities for caregivers to engage with a person living with advanced dementia. However, interactions may also be a contentious experience, what makes this so is not fully understood. We aimed to examine features of personal care interactions between caregivers and people with advanced dementia to understand how care may be improved. This was a naturalistic observation study using one-off video-recorded observations of personal care interactions between 14 people with advanced dementia and 12 caregivers (n = 7 care-home staff, n = 5 family carers) in the United Kingdom (total observation time 03:01:52). Observations were analyzed with observational video coding to determine the frequency of actions of people with dementia and qualitative content analysis for in-depth examination. Refusals of care were present in 32% of video sections. Active engagement of people with dementia was observed in 66% of sections. Rare contentious interactional components were characterized by the person with dementia appearing to show uneasiness and caregivers being flustered and uncertain. However, caregivers typically emanated a nurturing attentiveness, were attuned to the person, and skilled in seamlessly supporting them through care activities. Findings draw on real-world empirical evidence to reinvigorate the notion of person-centeredness in dementia care. The findings provide much needed insight into practical ways to improve care interactions for people with advanced dementia and enhance their personhood. Appropriate training/guidance for caregivers could support positive personal care experiences for both the person with dementia and caregiver.

Rural general practitioner confidence in diagnosing and managing dementia: A two-stage, mixed methods study of dementia-specific training.

Dementias a prevalent chronic healthcare condition affecting 46 million people worldwide and projected to grow in the coming years. Australians living in rural and regional areas often lack access to specialist dementia care, despite greater prevalence relative to metropolitan areas. This study aimed to explore general practitioners (GP) understanding, confidence and attitudes towards dementia management in the rural context, and design and pilot a dementia-specific training program. A two-stage, mixed methods design, using qualitative and quantitative methods. Sixteen regional GPs from across Victoria participated in scoping semi-structured interviews. Fourteen separate GPs in the St Anthony Family Medical Practice group in the regional Loddon-Mallee area of Victoria completed the pilot training intervention. Pre- and post-training surveys (n = 10), as well as post-training interviews (n = 10), assessed attitude and knowledge changes. Analysis of semi-structured scoping interviews indicated three themes regarding experience of dementia management, including: (1) attitudes to and experiences of dementia; (2) supporting people living with dementia; and (3) knowledge, education and training of dementia. The pilot dementia-specific training was found to improve attitudes (agreement across 24 best-practice indicators improved from 30% to 79%), knowledge (median increase of 2.5/10) and confidence in managing dementia and disclosing dementia diagnoses (median increase 3/10 and 2.75/10, respectively). General practitioners in this study lacked initial confidence in detecting and managing dementia in a rural primary care setting. A targeted training program showed improvements in these areas. Accessible, locally delivered, dementia education has the potential to improve confidence in early detection and management of people with dementia and thereby may address gaps in access to care for people living with dementia in rural settings.