People Living With Dementia Research Articles

Understanding primary care diagnosis and management of sleep disturbance for people with dementia or mild cognitive impairment: a realist review protocol

IntroductionThe increasingly ageing population is associated with greater numbers of people living with dementia (PLwD) and mild cognitive impairment (MCI). There are an estimated 55 million PLwD and approximately 6%...

The effect of COVID-19 on the home behaviours of people affected by dementia

The COVID-19 pandemic has dramatically altered the behaviour of most of the world’s population, particularly affecting the elderly, including people living with dementia (PLwD). Here we use remote home monitoring technology deployed into 31 homes of PLwD living in the UK to investigate the effects of COVID-19 on behaviour within the home, including social isolation. The home activity was monitored continuously using unobtrusive sensors for 498 days from 1 December 2019 to 12 April 2021. This period included six distinct pandemic phases with differing public health measures, including three periods of home ‘lockdown’. Linear mixed-effects modelling is used to examine changes in the home activity of PLwD who lived alone or with others. An algorithm is developed to quantify time spent outside the home. Increased home activity is observed from very early in the pandemic, with a significant decrease in the time spent outside produced by the first lockdown. The study demonstrates the effects of COVID-19 lockdown on home behaviours in PLwD and shows how unobtrusive home monitoring can be used to track behaviours relevant to social isolation.

Keeping the conversation going: How progressivity is prioritised in co-remembering talk between couples impacted by dementia.

This article explores how partners keep the conversation going with people living with dementia (PLWD) when speaking about shared memories. Remembering is important for PLWD and their families. Indeed, memory loss is often equated with identity loss. In conversation, references to shared past events (co-rememberings) can occasion interactional trouble if memories cannot be mutually recalled. This article analyses partners' interactional practices that enable progressivity in conversations about shared memories with a PLWD. In previous research, both informal and formal carers have reported that they can find interacting with PLWD difficult. Identifying practices used by partners is one way to begin addressing those difficulties. Analytical findings are based on over 26 hours of video data from domestic settings where partners have recorded their interactions with their spouse/close friend who is living with dementia. The focus is on 14 sequences of conversation about shared memories. We show how particular practices (candidate answers, tag questions and single-party memory of a shared event) structure the interaction to facilitate conversational progression. When partners facilitate conversational progressivity, PLWD are less likely to experience stalls in conversation. Our findings suggest the actual recall of memory is less relevant than the sense of shared connection resulting from the conversational activity of co-remembering, aiding maintenance of individual and shared identities. These findings have relevance for wider care settings.

Effectiveness of primary care psychological therapy services for the treatment of depression and anxiety in people living with dementia: Evidence from national healthcare records in England.

SummaryBackgroundDepression and anxiety are common and deleterious in people living with dementia (PLWD). It is currently unknown whether routinely provided psychological therapy can help reduce these symptoms in PLWD. This study aimed to investigate improvements in depression and anxiety symptoms over the course of therapy offered in primary care psychological therapy services in PLWD and to compare outcomes to people without dementia.MethodsNational data from Improving Access to Psychological Therapies services (IAPT) across England linked with Hospital Episode Statistics data, the Mental Health Services Dataset, and HES-ONS mortality data were used to identify 1,549 PLWD who completed a course of psychological treatment in IAPT between 2012-2019 and a propensity score matched control group without identified dementia. Outcome measures included pre-post intervention changes in depression (PHQ-9) and anxiety (GAD-7) symptoms and therapy outcomes (reliable improvement, recovery, deterioration).FindingsSymptoms of depression (t(1548)=31·05, p<·001) and anxiety (t(1548)=30·31, p<·001) improved in PLWD over the course of psychological therapy with large effect sizes (depression: d=-0·83; anxiety: d=-0·80). However, PLWD were less likely to reliably improve (OR=·75, 95%CI[·63,·88], p<·001) or recover (OR=·75, 95%CI[·64,·88], p=·001), and more likely to deteriorate (OR=1·35, 95%CI[1·03,1·78], p=·029) than a matched control sample without dementia.InterpretationPsychological therapy may be beneficial for PLWD with depression or anxiety, but it is currently not as effective as for people without dementia. More research is needed to improve access to psychological therapies and to understand this discrepancy and how therapies can be adapted to further improve outcomes.FundingThis work was supported by the Alzheimer's Society.

Public Health Messaging during the COVID-19 Pandemic and Its Impact on Family Caregivers' COVID-19 Knowledge.

Enabling accurate, accessible public health messaging is a critical role of public health officials during a pandemic, but family caregivers of people living with dementia (PLWD) have rarely been specifically addressed in public health messaging. The objective of this study was to examine how family caregivers for people living with dementia access and evaluate public health messaging in Alberta. An online survey was conducted with family caregivers for PLWD (n = 217). Most respondents rated public health messaging as good or excellent (63.9%), but specific information about how to access caregiving information (69.5%) and what to expect in the future (49.1%) was rated as less than good. Family caregivers also identified how to care for a PLWD during the pandemic (57.5%) as a key information need. Healthcare providers/workers were the least frequently used source of public health messaging. Almost all family caregivers (94.4%) rated their own COVID-19 knowledge as good or excellent. Tailored, context-driven public health messaging for family caregivers of PLWD is critically needed.

Impact of confinement measures due to the COVID-19 pandemic on people living with dementia and their caregivers in Spain.

The COVID‐19 pandemic has particularly affected people living with dementia (PLWD) and their caregivers, who have seen their access to social support services and opportunities for socialisation limited. The objective of the study was to explore the impact of COVID‐19 on PLWD and their caregivers in Spain. An online survey was conducted between November 27, 2020, and January 19, 2021, that explored compliance with prevention guidelines, changes at the family level and in access to social support services. Instruments were included to estimate levels of anxiety and depression. The survey was answered by 229 people (161 current caregivers, 54 former caregivers, 13 formal caregivers and 1 person with dementia). Analysis of the current and former caregivers showed that they felt well informed, although they find it difficult for PLWD to comply with prevention guidelines. The use of social support services was reduced and the difficulty of access to social and health services increased, there was a negative impact on the economic situation and family relationships, with an increase in perceived overload. In addition, caregivers of PLWD scored above the cut‐off points in the tests used to assess depression and anxiety, although the results of the multiple regression analysis do not allow us to conclude that the loss of resources influences the anxiety and depression scores. The negative impact of the pandemic on caregivers of PLWD is verified. It is necessary to adapt social support services and design strategies to maintain the provision of support to these vulnerable groups.

Bridging gaps in the design and implementation of socially assistive technologies for dementia care: the role of occupational therapy

Dementia is a global health challenge, and people living with dementia (PLWD) are especially susceptible to reduced engagement in meaningful occupations, including social participation. In the past few decades, socially assistive technologies continue to be developed amidst a rapidly evolving technological landscape to support the social health of PLWD and their caregivers. Examples include social robots, virtual reality, smart home technology, and various digital technologies, such as mobile applications for tablets and smartphones. Despite an increasing body of research and interest in this field, several gaps relating to the design and implementation process of socially assistive technologies continue to undermine their relevance for PLWD in daily life. In this paper, some of these gaps are highlighted and the role of occupational therapy in the design and implementation of socially assistive technology is presented. In the design process, occupational therapists are uniquely skilled to advise and advocate for the tailoring and personalisation of technology to address the occupational needs of PLWD. In the implementation of socially assistive technologies, occupational therapists are skilled to educate, train, and conduct ongoing evaluations with PLWD and their caregivers, to incorporate socially assistive technologies into their routine and daily lives. We recommend that occupational therapists should continue to be acquainted with such technologies through continuous professional development and educational curricula. Moreover, we highlight the necessary collaboration between occupational therapists, technology developers, and researchers to enhance the process of designing and implementing socially assistive technology, so that their relevance for PLWD and their caregivers can be maximised. Implications for rehabilitation Developers and designers of socially assistive technology should consider the disease trajectory of different types of dementia, as well as the different needs, abilities, preferences, occupations and routines of people living with dementia (PLWD) and/or their caregivers. Collaborations between technology developers, researchers, and occupational therapists should take place iteratively throughout the process of designing and implementing socially assistive technology to maximise their relevance and applicability for people living with dementia and their caregivers. To continue enhancing the current role of occupational therapy in socially assistive technology provision, occupational therapists should keep up to date with socially assistive technology that are being developed to support the social health of PLWD.

Who's Helping Whom? Examination of Care Arrangements for Racially and Ethnically Diverse People Living With Dementia in the Community.

Objective: To address notions around care arrangements for Black and Hispanic people living with dementia (PLwD), the study examined if racial and ethnic differences exist for community-dwelling PLwD. Methods: Using cross-sectional data from the 2015 National Health and Aging Trends Study, we used Pearson's chi-square and mean comparison to examine differences among a sample of n = 863 community-dwelling White, Black, and Hispanic older PLwD. Results: Black PLwD were less likely than White PLwD to use paid help (26.8% vs. 32.6%), but Hispanic PLwD were most likely to use paid help (46.2%, p < 0.05). Black and Hispanic older adults were more often receiving help from a child (65.8% and 72.2%, respectively; p = 0.01) or other family member (40.3% and 31.0%, respectively; p < 0.01). Discussion: Our findings highlight the important role of familial support in care provision for Black and Hispanic communities. Caregiving supports should be intentional in centering services on the family, not a sole caregiver.

Fostering Mobility for People Living with Dementia in Suburban Neighborhoods Through Land Use, Urban Design and Wayfinding

The World Health Organization (WHO) calls dementia the leading cause of dependency and disability among older adults. People living with dementia (PLWD) are more likely to reside in community, and often within suburban areas. This research examines mobility barriers and supports for PLWD within suburban neighborhoods in Waterloo, Canada. We conducted thirteen participatory go-along interviews with seven PLWD, identifying supports/barriers relating to land-use and transportation, urban design, and wayfinding. While this research highlighted mobility barriers for participants, suburban neighborhoods were also perceived as enabling environments, highlighting the need for a more nuanced understanding of life in suburban settings.

Social and spatial inequalities in healthcare use among people living with dementia in England (2002–2016)

Objectives Healthcare services for people living with dementia (PLWD) are stretched, and government promises of increased funding remain undelivered. With the UK dementia population to surpass 1 million by 2024, and dementia care costs predicted to almost treble by 2040, it is essential we understand differences in healthcare use among PLWD. This study aimed to explore social and spatial variations in healthcare use among people diagnosed with dementia (2002–2016). Methods Data were derived from Electronic Health Records of Clinical Practice Research Datalink GP patients in England (n = 142,302). To standardise healthcare contacts, rates of healthcare contacts per year were calculated for three primary (GP observations and medications) and three secondary healthcare types [Accident & Emergency (A&E) attendances and, emergency and elective hospital admissions]. Fully-adjusted generalised linear regression models were used to identify healthcare use variation by social and spatial groups. Twelve models were generated, one for each healthcare type in early- and late-onset populations separately. Results This study highlights numerous social and spatial variations in healthcare use among PLWD. Among PLWD, several groups tended to have healthcare service use more closely associated with negative outcomes, including a greater likelihood of A&E attendances and emergency and elective hospital admissions. These groups include: men, people from White ethnicity groups and people from more deprived and rural areas. Conclusions Systemic and social measures are needed to reduce variations in healthcare use inequalities in PWLD. These include greater healthcare continuity, health checks and medicines reviews, culturally appropriate services, better and more accessible treatment and improved infrastructure.

Public Health Messaging During COVID-19 and its Impact on Family Caregivers’ COVID-19 Knowledge

Background: Providing accurate, accessible public health messaging (PHM) is a critical role of public health officials during a pandemic, but family caregivers (FCGs) of people living with dementia (PLWD) have rarely been specifically addressed in PHM. Objective: To examine how FCGs of PLWD access and evaluate the public health messaging in Alberta. Methods: An online survey was conducted with FCGs for PLWD (n=217). Results: Most respondents rated PHM as good or excellent (63.9%), but specific information about how to access caregiving information (69.5%) and what to expect in the future (49.1%) was rated less than good. FCGS also identified how to care for a PLWD during the pandemic (57.5%) as a key information need. Healthcare providers/workers were the least frequently used source of public health information. Almost all FCGs (94.4%) rated their own COVID-19 knowledge as good or excellent. Discussion: Tailored, context-driven PHM for FCGs of PLWD is critically needed. Three key points that summarize the policy relevance and recommendations of the paper 1. Utilize diverse media sources to communicate PHM, including television, radio, and print media in addition to online sources. 2. Tailor information to the needs of specific vulnerable populations such as FCGs of PLWD, including information and advice on topics such as: explaining public health measures to people with dementia and cognitive impairment; accessing respite if the caregiver contracts COVID-19; accessing long term care; and how and when community resources are being adapted/reinstated. 3. Focus on building capacity in FCGs through targeted supports and services to address the heterogeneous needs in the caregiving role.

Including formal and informal caregivers in the development of Play Intervention for Dementia: a qualitative study

BackgroundPlay Intervention for Dementia is a practice initiative using play to help people living with dementia (PWD) experience engagements, autonomy, and cognitive stimulation. This program was developed under a participatory paradigm, with extensive contribution from formal and informal caregivers. This article describes how caregivers contributed to the practice principles, materials, and assessment during the development phase of Play Intervention for Dementia through community-based participatory research (CBPR).MethodsThree service supervisors, 16 formal caregivers and 14 informal caregivers from the community participated in this study. Based on CBPR, the study progressed in a reflexive, iterative and collaborative way. Data were collected from diverse sources, including practice journals, observation notes and reflexive focus group interviews. Two trained qualitative researchers conducted thematic analysis on the data collected, with focus on practical skills, outcomes, and caregivers’ general experience during the intervention.ResultsThe therapeutic and liberating power of play was thoroughly discussed by the caregivers. They considered play as an innovative way to understand, engage, and connect with the PWD. Also, improvement in energy level, motivation and communicative capacity was observed among the PWD. The researcher and caregivers collaboratively refined and designed the protocol of Play Intervention for Dementia, adding localized principles and games to the original design.ConclusionCaregivers found play to be a meaningful way to engage with PWD, as it provided an equal platform for them. The intervention also enabled them to reflect upon ageing and disease at a deeper level. Caregivers have contributed significantly to the refinement and contextualisation of the intervention. The efficiency of the refined program should be further tested on a larger scale.

Diabetes management in people living with dementia in Japan: a qualitative exploration.

Dementia and diabetes are highly prevalent among the older society in Japan. People living with dementia (PLWD) often face hurdles in managing diabetes. This study explored the perspectives of healthcare providers in Japan regarding diabetes management in PLWD. We conducted a qualitative study using in-depth interviews as a data collection method. A total of 15 physicians and nurses were interviewed. A qualitative content analysis of the codes was performed to generate the themes. The major themes focused on the management of medications/therapeutic regimen, difficulties of continuing health care, emotional aspects of PLWD for adherence to lifestyle modification, and varying direction and degree of family support for diabetes care. PLWD in Japan face challenges in medication management, food restriction, and lifestyle modification. Policies to engage home visit care workers in medication management, consideration of the emotional aspect of PLWD, and utilisation of social support might help in the proper management of diabetes in PLWD.

‘It was just – everything was normal’: outcomes for people living with dementia, their unpaid carers, and paid carers in a Shared Lives day support service

Objectives Short breaks support the wellbeing of people living with dementia (PLWD) and their unpaid carers. However, little is known about the benefits of community-based short breaks. The objective of this study was to conduct interviews with stakeholders of a Shared Lives (SL) day support service to explore mechanisms and outcomes for the service. The aim of the study was to refine a logic model for a SL day support service for PLWD, their unpaid carers, and paid carers. This logic model shall form the basis for a Social Return on Investment evaluation to identify the social value contributed by the service. Methods Thirteen interviews were conducted with service stakeholders including PLWD, unpaid carers and paid carers. Framework analysis assisted in the synthesis of the findings into a logic model. Results The logic model refined through the interviews, detailed service mechanisms (inputs, activities, outputs) and outcomes. An overarching theme from the interviews concerned the importance of triadic caring relationships, which conferred benefits for those involved in the service. Conclusion SL day support fosters triadic caring relationships, and interview data suggests that these relationships are associated with meaningful outcomes for PLWD, their unpaid carers, and paid carers. We highlight the implications for policy, practice, and future research.

Psychobiological Evaluation of Day Clinic Treatment for People Living With Dementia - Feasibility and Pilot Analyses.

BackgroundHospitalization is often stressful and burdensome for people living with dementia (PwD) and their informal caregivers (ICs). Day clinic treatment may provide a suitable alternative, but is often precluded by a diagnosis of dementia. Furthermore, it is often caregiver-based ratings that measure treatment success as the validity of self-reports in PwD is critically discussed. We therefore set out to examine the feasibility of psychobiological stress measures in PwD and ICs and to evaluate treatment trajectories considering both the day clinic context and the daily life of the dyads.MethodA total of 40 dyads of PwD (mean age: 78.15 ± 6.80) and their ICs (mean age: 63.85 ± 13.09) completed paper-and-pencil questionnaires (covering stress, depressive symptoms, and caregiver burden among others) in addition to the measurement of hair cortisol concentrations (HCC) at admission, discharge, and follow-up 6 months after day clinic treatment. As part of an ambulatory assessment, for 2 days at the beginning and 2 days at the end of the day clinic treatment, PwD and ICs collected six saliva samples per day for the analysis of salivary cortisol (sCort) and alpha-amylase (sAA).ResultsPaper-and-pencil questionnaires and HCC assessments were more feasible than the ambulatory assessment. We found discrepancies between subjective and physiological markers of stress in PwD. Whereas HCC decreased over time, self-reported stress increased. Child–parent dyads reported decreases in neuropsychiatric symptoms, associated burden, and self-reported stress from admission to follow-up. In daily life, both PwD and ICs showed characteristic diurnal profiles of sAA and sCort, however, we found no differences in summary indicators of salivary stress markers over time.DiscussionThe psychobiological evaluation was feasible and added informative value, underlining the potential of physiological stress markers to complement self-reports on stress in PwD and to objectively evaluate treatment trajectories. In this sample, HCC was more feasible and acceptable as biological marker of stress compared to saliva samples. Concerning treatment trajectories, differential effects on the dyads were found, with child–parent dyads benefiting more from day clinic treatment compared to spousal dyads.

Psychobiological Monitoring of a Home-Based Dyadic Intervention for People Living with Dementia and Their Caregivers: Added Value to Evaluate Treatment Success and Understand Underlying Mechanisms.

Research concerning people living with dementia (PwD) and their informal caregivers (ICs) has recently begun to focus on dyadic aspects of psychosocial interventions. We adapted a dyadic psychosocial intervention and examined its effects on psychobiological stress in daily life. Twenty-four PwD-caregiver dyads were visited seven times at home by specialized nursing staff. Momentary subjective stress, salivary cortisol (sCort), and salivary alpha-amylase (sAA) were measured in PwD and ICs before and after each home visit as well as six times per day at two days each at the beginning and end of the intervention as part of an ambulatory assessment. Hair cortisol concentrations (HCC) were measured twice. After each home visit session, ICs reported lower subjective stress. sCort was lower in both ICs and PwD, whereas sAA did not change. In daily life, area under the curve (AUCg) concerning sCort secretion indicated that PwD had lower sCort daily output at the end of the intervention, and AUCg concerning subjective stress indicated that both PwD and ICs reported lower subjective stress than at the beginning of the intervention. AUCg concerning sAA did not change over time in either group. HCC did not vary over time but increased with disease severity. The psychosocial intervention reduced psychobiological stress but affected psychobiological stress measures differently in PwD and ICs. In particular, the discrepancy between subjective and physiological markers of stress in PwD emphasizes the added value to evaluate treatment success and understand underlying mechanisms as a complement to self-reports.

EXPLORING THE POTENTIALS OF REMINISCENCE THERAPY IN DEMENTIA CARE: IMPACTS ON THE PERSONHOOD OF THE PERSONS LIVING WITH DEMENTIA.

Dementia is a clinical syndrome which results from progressive degeneration of the brain functions . In addition, psychosocial factors have also been documented to be associated with the progression of dementia . Dementia is a major contributor to the disability with impacts on every aspect of the life of people living with dementia (PWD) . Furthermore, dementia may jeopardise the personhood of PWD . As a shift from the one-sided biomedical approach to managing dementia, the biopsychosocial approach has been described as a holistic form of approach which takes cognizance of the person 'behind' dementia and not just the disease process only . Hence, the advocacy for the use of psychosocial interventions in dementia care. One of the leading psychosocial interventions that may be helpful in dementia care is reminiscence therapy . Reminiscence involves discussion of past events and experiences using materials like photos, music, maps and the use of technology, to bring about recall of...

Family Caregiving for People Living With Dementia During COVID-19: A Thematic Analysis.

This study examines the experiences and needs of family caregivers (FCGs) for people living with dementia (PLWD) during the coronavirus disease 2019 (COVID-19) pandemic. Six focus groups were conducted with 21 FCGs from across the care continuum and thematic analysis was used to illuminate FCGs descriptions of their experiences and needs. Three main themes were identified that highlight the disruption the pandemic caused for FCGs: changes in the caregiving role, information use and needs, and mental and physical health outcomes. To better support FCGs during COVID-19 and future public health emergencies, we recommend that (a) information is accessible, specific, and centralized; (b) resources are tailored to the caregiving dyad (FCG and PLWD) and creatively adapted to public health restrictions; and (c) opportunities for the caregiving dyad to receive physical, social, and emotional engagement and support are maintained.

Process evaluation of the New Interventions for independence in Dementia Study (NIDUS) Family stream randomised controlled trial: protocol

IntroductionNew Interventions for independence in Dementia Study (NIDUS)-Family is an Alzheimer’s Society funded new manualised, multimodal psychosocial intervention to support people living with dementia (PLWD) to achieve goals that they...

Predictors of Awareness of Functional Ability in People with Dementia: The Contribution of Personality, Cognition, and Neuropsychiatric Symptoms – Findings from the IDEAL Program

Introduction: Discrepancy scores reflecting the difference between parallel ratings made by people living with dementia (PwD) in the mild-to-moderate stages and by their informants provide a way to investigate awareness of functional ability in relation to activities of daily living (ADL). Methods: Two measures of ADL (Functional Activities Questionnaire; Dependence Scale) were completed by 1,227 PwD and their informants in the IDEAL cohort study baseline assessment. Self-rated and informant-rated scores were used to calculate discrepancies, which were used as an indicator of awareness of functional ability. Smaller discrepancy scores were considered to reflect greater awareness on the part of PwD. PwD completed questionnaires on depression, personality, comorbidities, neuropsychiatric symptoms, and completed a measure of cognition. Informants provided ratings of stress. Univariable and multiple regressions were used to investigate factors related to ADL discrepancy. Results: A similar pattern of associations were found for both ADL discrepancy scores. Smaller discrepancy scores were associated with higher levels of depression, higher neuroticism, fewer neuropsychiatric symptoms, higher comorbidity, lower carer stress, and receipt of less than 1 hour of care per day from the informant. Discussion/Conclusion: There was a clear pattern of factors that were associated with greater awareness for both measures of functional ability. These factors associated with smaller discrepancy scores could be used to identify PwD who might benefit from targeted interventions to support their independence.