People Living With Dementia Research Articles

Avoiding repair, maintaining face: Responding to hard-to-interpret talk from people living with dementia in the acute hospital

People living with dementia (PLWD) are almost always admitted to the acute hospital for reasons unrelated to their dementia, finding themselves in the unfamiliar environment of a Health Care of Older Persons acute ward. The effect of this environment creates a challenge not just for a PLWD themselves, but also for the staff who care for them. Concerns have been raised by both policy makers and staff about the quality of communication between hospital staff and PLWD. Using conversation analysis, we examined 41 video recordings of healthcare professional (HCP)/PLWD interactions collected across three acute inpatient wards in a large teaching hospital in the UK. In this paper, we focus our analysis on hard-to-interpret talk (talk where there are problems in hearing, speaking and/or understanding), and the ways in which healthcare professionals respond to this. Repair of hard- to- interpret talk is common in ordinary interaction, but we find that HCPs in this setting use a range of approaches to avoid direct repair. These approaches are: the use of non-committal responses and continuers such as ‘yeah’ or nods; the use of repetitions or partial repetitions; responding to the emotional tone displayed in the PLWD's utterance; closing the current topic and shifting to the next; and treating the PLWD's talk as related to the task at hand. We suggest that the use of these approaches may be one way in which HCPs manage respecting the personhood of the PLWD, by preserving face and enabling a continuation of an interaction in which the PLWD can take an active part. Our paper provides an empirical demonstration of the high level of interactional skill involved in dementia care work. It also illustrates how these skills can be described and specified, and hence incorporated into the recommendations and tips that are produced for communication with PLWD.

Tracking agitation in people living with dementia in a care environment

Agitation is a symptom that communicates distress in people living with dementia (PwD), and that can place them and others at risk. In a long term care (LTC) environment, care staff track and document these symptoms as a way to detect when there has been a change in resident status to assess risk, and to monitor for response to interventions. However, this documentation can be time-consuming, and due to staffing constraints, episodes of agitation may go unobserved. This brings into question the reliability of these assessments, and presents an opportunity for technology to help track and monitor behavioural symptoms in dementia. In this paper, we present the outcomes of a 2 year real-world study performed in a dementia unit, where a multi-modal wearable device was worn by 20 PwD. In line with a commonly used clinical documentation tool, this large multi-modal time-series data was analyzed to track the presence of episodes of agitation in 8-hour nursing shifts. The development of a baseline classification model (AUC=0.717) on this dataset and subsequent improvement (AUC= 0.779) lays the groundwork for automating the process of annotating agitation events in nursing charts.

Integrating the Financing and Delivery of Medical and Supportive Services for People Living With Dementia

The number of people living with dementia (PLWD) is expected to grow considerably in the coming years. PLWD often have substantial medical and supportive service needs and face fragmentation of services across payers and across health and social service systems; recently, efforts have been made to achieve greater integration of care and financing. This article considers issues related to integrating long-term services and supports (LTSS), medical care, and financing for PLWD; reviews the policy context and key clinical and delivery system challenges to these efforts; and describes key lessons regarding integration learned from examples in the field. Recommendations are provided and include the following: (1) assess carefully whether integration of medical and LTSS is required to achieve the intended outcomes of an intervention or program targeted at PLWD; if integration is needed, select carefully the types of medical and LTSS to integrate and the mode of integration; (2) use measures that evaluate quality across LTSS settings in which PLWD receive care; (3) assess whether and how eligibility and payment policies pose barriers to PLWD from receiving services they need, and evaluate ways in which policies might be reformed to meet beneficiaries’ needs; and (4) conduct research examining the potential of value-based payment efforts to improve the quality and efficiency of care received by PLWD, including their potential impact on out-of-pocket expenses and caregiving burden for PLWD and their families.

Needs, issues, and expectations on dementia care at home across Europe to inform policy development: Findings from a transnational research study

This qualitative descriptive study explored needs, issues, and expectations on dementia care at home as expressed by relatives of people living with dementia (PwD), health and social care professionals (HSCPs), and members of civil society organisations (CSOs) from four European countries. A focus group methodology integrated with individual semi-structured interviews was adopted to collect data by employing a purposeful sampling method. A total of 13 focus groups and 12 individual interviews were conducted in 2019, involving 65 relatives of PwD, 32 HSCPs, and 23 members of CSOs. Deductive content analysis and findings triangulation were performed to analyse data, and a subgroup of participants confirmed the findings. Relatives need to be (a) informed and trained to cope with changes in PwD, (b) recognised for their caregiving role, and (c) assisted by specialised HSCPs. Professionals who work in partnership with PwD and their relatives call for a reorganisation of available services. CSOs compensate for the lack of proper support, promoting networks, and cooperation with local communities.Several commonalities emerged across countries, highlighting the chance to inform and develop common policies to improve the quality of life of PwD and their relatives across Europe. Policies improving person- and family-centred care and spreading dementia-friendly community concepts and practices are suggested. Strong collaborations between formal and informal services and communities are also needed as well as information on educational strategies to improve the use of resources, promote PwD care, and support PwD relatives’ needs.

Exploring homeostatic value of space to prevent maladaptive behaviours of people living with dementia: a narrative study

ABSTRACT The aim of this paper is to raise awareness and provide a frame of analysis to prevent environmental triggers of maladaptive behaviours of people living with dementia (PwD), for which transition to an institutional setting can cause great distress. Institutional settings are one of the main causes of maladaptive beaviours of PwD. We provide a narrative description of an environmental analogue, using thick description methodology of a design fiction situation – a long-haul flight – to illustrate similar behavioural processes taking place in a setting for all comers to understand psycho-environmental mechanisms that lead PwD to distress. Phenomenology of homeostatic value of space is discussed. We identify four main factors to apprehend homeostatic value of space: (1) Survival properties of the environment; (2) Person-Environment fit; (3) Environmental control and (4) Sensoristasis. This paper discusses environmental mechanisms of dwelling facilities for PwD that can positively influence their psychological and behavioural well-being.

A Pilot Study to Detect Agitation in People Living with Dementia Using Multi-Modal Sensors.

People living with dementia (PLwD) often exhibit behavioral and psychological symptoms, such as episodes of agitation and aggression. Agitated behavior in PLwD causes distress and increases the risk of injury to both patients and caregivers. In this paper, we present the use of a multi-modal wearable device that captures motion and physiological indicators to detect agitation in PLwD. We identify features extracted from sensor signals that are the most relevant for agitation detection. We hypothesize that combining multi-modal sensor data will be more effective to identify agitation in PLwD in comparison to a single sensor. The results of this unique pilot study are based on 17 participants' data collected during 600 days from PLwD admitted to a Specialized Dementia Unit. Our findings show the importance of using multi-modal sensor data and highlight the most significant features for agitation detection.

The potential dangers of not understanding COVID-19 public health restrictions in dementia: \u201cIt\u2019s a groundhog day \u2013 every single day she does not understand why she can\u2019t go out for a walk\u201d

BackgroundSudden public health restrictions can be difficult to comprehend for people with cognitive deficits. However, these are even more important for them to adhere to due to their increased levels of vulnerability, particularly to COVID-19. With a lack of previous evidence, we explored the understanding and changes in adherence to COVID-19 public health restrictions over time in people living with dementia (PLWD).MethodsUnpaid carers and PLWD were interviewed over the phone in April 2020, shortly after the nationwide UK lockdown, with a proportion followed up from 24th June to 10th July. Participants were recruited via social care and third sector organisations across the UK, and via social media.FindingsA total of 70 interviews (50 baseline, 20 follow-up) were completed with unpaid carers and PLWD. Five themes emerged: Confusion and limited comprehension; Frustration and burden; Putting oneself in danger; Adherence to restrictions in wider society; (Un) changed perceptions. Most carers reported limited to no understanding of the public health measures in PLWD, causing distress and frustration for both the carer and the PLWD. Due to the lack of understanding, some PLWD put themselves in dangerous situations without adhering to the restrictions. PLWD with cognitive capacity who participated understood the measures and adhered to these.DiscussionIn light of the new second wave of the pandemic, public health measures need to be simpler for PLWD to avoid unwilful non-adherence. Society also needs to be more adaptive to the needs of people with cognitive disabilities more widely, as blanket rules cause distress to the lives of those affected by dementia.

Evaluating the Clinical Impact of National Dementia Behaviour Support Programs on Neuropsychiatric Outcomes in Australia.

Background/Objective: People living with dementia (PLWD) in residential aged care homes (RACHs) are frequently prescribed psychotropic medications due to the high prevalence of neuropsychiatric symptoms, also known as behaviours and psychological symptoms of dementia (BPSD). However, the gold standard to support BPSD is using psychosocial/non-pharmacological therapies. This study aims to describe and evaluate services and neuropsychiatric outcomes associated with the provision of psychosocial person-centred care interventions delivered by national multidisciplinary dementia-specific behaviour support programs.Methods: A 2-year retrospective pre-post study with a single-arm analysis was conducted on BPSD referrals received from Australian RACHs to the two Dementia Support Australia (DSA) programs, the Dementia Behaviour Management Advisory Service (DBMAS) and the Severe Behaviour Response Teams (SBRT). Neuropsychiatric outcomes were measured using the Neuropsychiatric Inventory (NPI) total scores and total distress scores. The questionnaire version “NPI-Q” was administered for DBMAS referrals whereas the nursing home version “NPI-NH” was administered for SBRT referrals. Linear mixed effects models were used for analysis, with time, baseline score, age, sex, and case length as predictors. Clinical significance was measured using Cohen's effect size (d; ≥0.3), the mean change score (MCS; 3 points for the NPI-Q and 4 points for the NPI-NH) and the mean percent change (MPC; ≥30%) in NPI parameters.Results: A total of 5,914 referrals (55.9% female, age 82.3 ± 8.6 y) from 1,996 RACHs were eligible for analysis. The most common types of dementia were Alzheimer's disease (37.4%) and vascular dementia (11.7%). The average case length in DSA programs was 57.2 ± 26.3 days. The NPI scores were significantly reduced as a result of DSA programs, independent of covariates. There were significant reductions in total NPI scores as a result of the DBMAS (61.4%) and SBRT (74.3%) programs. For NPI distress scores, there were 66.5% and 69.1% reductions from baseline for the DBMAS and SBRT programs, respectively. All metrics (d, MCS, MPC) were above the threshold set for determining a clinically significant effect.Conclusions: Multimodal psychosocial interventions delivered by DSA programs are clinically effective as demonstrated by positive referral outcomes, such as improved BPSD and related caregiver distress.

Navigating the new normal: accessing community and institutionalised care for dementia during COVID-19

Objectives: Little is known about how community services and institutional care settings have adapted to providing support since the COVID-19 pandemic. The aim was to explore how these care services have adapted during the pandemic in the UK and are providing care to people living with dementia (PLWD) and carers. Method: Semi-structured telephone interviews were conducted in June and July 2020 with 16 purposefully sampled unpaid dementia carers. Participants were asked about their experiences of accessing care services since the lockdown, and whether they were beneficial, if accessed at all. Results: Three themes were identified: (1) Impacts of no activities; (2) Difficulties accessing care during the pandemic; (3) Remote vs. face-to-face support. Loss of access to previously enjoyed activities and having had to shield for many PLWD is suggested to have led to severe physical and cognitive deteriorations, advancing the dementia. Where remote support was available, this was helpful to some, but did not replace the benefits of face-to-face support. Where PLWD were residing in a care home, carers had very limited remote access. Conclusions: This is the first study to explore the impact on carers both from a community and institutionalised care angle. Few care services have adapted to providing remote support. With the vaccine taking time to be accessible to everyone, it is vital for organisations to work closely with carers and PLWD to adapt services to provide much needed support.

Dementia Care Apps for People with Dementia and Informal Caregivers: A Systematic Review Protocol

Dementia drastically impacts the quality of life (QOL) of both people living with dementia (PLwD) and their family caregivers. As dementia progresses and care needs escalate, the likelihood of institutionalization is increased, which is counter to the wishes of the majority of older adults and their family members. Dementia care apps can provide critical support and have the potential to improve the QOL of both PLwD and their family caregivers and reduce perceived caregivers’ burden. However, there is a lack of understanding of the needs of both PLwD and their family caregivers related to dementia care apps. There is also a gap in understanding the privacy concerns in relation to the apps among older adults with dementia and their caregivers. As such, the main aims of this systematic review are to understand the landscape of dementia mobile apps targeting PLwD and their caregivers with respect to the features of the apps, usability testing, and the privacy and security aspects of the app from the perspective of both app developers/researchers and the end users (PLwD and family caregivers who provide care of PLwD). Extensive databases, including ACM Digital Library, Cochrane Central Register of Controlled Trials, Compendex, Embase, Inspec, Ovid MEDLINE(R) Daily, Proquest Dissertations and These Global, PsycINFO, and Scopus, have been searched. All searches are from the inception of the databases. All peer-reviewed studies and articles written in the English language are included. Two reviewers will independently screen and select the studies with the involvement of a third reviewer for disagreements. Data will be abstracted using a custom data extraction form that is made based on the research questions. Critical Appraisal Skills Programme (CASP) checklists will be used to assess the study quality. As the first review of its kind, the findings from this review will provide valuable insights related to the needs of the dementia care apps for both PLwD and their family caregivers. The review will be relevant to health providers who are interested in using technologies to promote the independence of PLwD and reduce the stress experienced from caregivers of PLwD. The review will also serve as a guide to app developers and researchers to design usable and acceptable apps. In addition, the review will provide critical knowledge of the privacy and security features of the app to reveal the valid concerns from the end users and thus help with the uptake and adoption of the dementia care apps.

Trajectories of socio-emotional functioning in early-stage dementia: implications for the individual with dementia and their family carer

Background and objectives Changes in socio-emotional functioning in people living with dementia (PLWD) are common; however, little is known about the broader effects these may have on wellbeing. This study examined socio-emotional functioning over time and associations with the wellbeing of PLWD and their family carers. Method One hundred and one individuals with a diagnosis of dementia and their respective carers completed the Social Emotional Questionnaire (assessing emotion recognition, empathy, social relationships and social behaviour) alongside measures of dementia severity, cognition, mood, stress, and relationship quality. Sixty-six dyads were reassessed on the same measures at 12 months post-baseline, and 51 dyads again at 20 months post-baseline. Results When rated by the PLWD, there was no change in socio-emotional functioning over time; however, carers reported a significant decline over time. For both carers and the PLWD, poorer wellbeing measures were indicative of worse socio-emotional functioning at Time 1, though only dementia type, quality of life and relationship quality impacted upon the trajectory of socio-emotional decline over time. Conclusions Changes in social and emotional functioning are evident early in the course of dementia and worsen within 20 months. Both carer characteristics and those of the PWLD affected reporting of social and emotional functioning. These data are useful for guiding the provision of appropriate education and care.

Emotional and Mental Wellbeing Following COVID-19 Public Health Measures on People Living With Dementia and Carers

Background:To date, there appears to be no evidence on the longer-term impacts caused by COVID-19 and its related public health restrictions on some of the most vulnerable in our societies. The aim of this research was to explore the change in impact of COVID-19 public health measures on the mental wellbeing of people living with dementia (PLWD) and unpaid carers.Method:Semi-structured, follow-up telephone interviews were conducted with PLWD and unpaid carers between June and July 2020. Participants were asked about their experiences of accessing social support services during the pandemic, and the impact of restrictions on their daily lives.Results:20 interviews were conducted and thematically analyzed, which produced 3 primary themes concerning emotional responses and impact to mental health and wellbeing during the course of the pandemic: 1) Impact on mental health during lockdown, 2) Changes to mental health following easing of public health, and 3) The long-term effect of public health measures.Conclusions:The findings from this research shed light on the longer-term psychological impacts of the UK Government’s public health measures on PLWD and their carers. The loss of social support services was key in impacting this cohort mentally and emotionally, displaying a need for better psychological support, for both carers and PLWD.

The Right to (Re)Shape the City

Problem, research strategy and findings The number of people living with dementia (PLWD) is set to increase to 132 million by 2050, with most expected to reside in their own homes, not congregate living settings. Limited research on the impact of the built environment on PLWD has focused on planning outcomes, with no research on access to the planning process that shapes the places they live in. In this study I ask: what are the barriers and facilitators to participation for PLWD at open houses? I accompanied seven PLWD (individually or in pairs) to open houses, a commonly used public engagement tool, in Waterloo (Canada). To capture the experiences, I used audio recordings, field notes and sketches, photographs, and a postexperience interview with participants. Accessibility of public engagement tools for PLWD can be improved by ensuring respectful and patient communication (not rushing attendees, using plain language); providing clear, concise presentation materials (less is more, offering in-the-moment feedback opportunities); and using a familiar, comfortable physical location (sensitive to sensory overstimulation through acoustics and lighting). The sense of inclusion participants felt in attending the open houses was unexpected. Takeaway for practice The open house is already well suited to the accessibility needs of PLWD, with peripheral, circular layouts allowing participants to learn at their own pace and interact one on one with practitioners. However, the recommendations that would make public engagement tools more accessible to PLWD are easily implementable, and by educating planners in these techniques there could be an opportunity for the profession to help dismantle the stigma associated with dementia. The commonly used public engagement tools used during the planning process need to be universally accessible so PLWD and other people with disabilities can attend any meeting they choose and have an impact on decision making in their communities.

Dementia-Friendly Neighborhood and the Built Environment: A Scoping Review

There has been a proliferation of research on dementia-friendly communities in recent years, particularly on interpersonal and social aspects. Nonetheless, the neighborhood built environment remains a co-constituent of the lived experience of people living with dementia (PLWD) that is amenable to interventions for health and well-being in the community. This scoping review presents a narrative synthesis of empirical research on dementia-friendly neighborhoods, with a focus on the built environment and its associated sociobehavioral aspects. Planning and design principles are distilled to identify research and policy implications. We reviewed 29 articles identified through a systematic search of AgeLine, PsycINFO, Cumulative Index to Nursing and Allied Health Literature, Global Health, Medical Literature Analysis and Retrieval System Online, and Scopus. Peer-reviewed articles that employed quantitative and/or qualitative methods in community settings were included. An equal number of studies focused on behavioral/psychosocial aspects of the built environment and assessment of specific environmental features. The former often used qualitative methods, whereas statistical methods were common in studies on discrete features of the neighborhood built environment. Few studies focused on rural contexts. Emerging research areas include interactions between dementia risk factors and neighborhood environments to support primary and secondary prevention. The body of literature needs expansion into planning and design fields to foster community participation of PLWD by optimizing environmental stimuli, minimizing environmental barriers, and engaging PLWD in dementia-friendly community initiatives. While evidence has accumulated on landmarks and social participation at the individual level, research at the community and policy levels is limited. This requires advanced mixed methods.

Everyday built environments of care: Examining the socio-spatial relationalities of suburban neighbourhoods for people living with dementia

There has been a call from US policy advisors to expand research on people living with dementia (PLWD) from health and social sectors to urban planning. The World Health Organization projects the number of PLWD to increase from 47 to 132 million worldwide by 2050, with 60–80% of PLWD residing within the community (as opposed to congregate settings). For PLWD, being supported by their neighbourhoods in terms of access has many benefits: more social interaction, sense of worth, dignity, and improved physical/mental health. As PLWD are likely to experience a “shrinking world” effect, it is important to investigate the socio-spatial relationality between PLWD and their neighbourhoods. Using a relational care lens, this research seeks to understand the everyday practices of seven (7) PLWD in their suburban neighbourhoods using multiple methods (semi-structured and go-along interviews, GPS tracking, travel diaries). PLWD interact with their neighbourhoods through processes of caring for self in the past, present, and future, in addition to (re)organizing their newfound interdependent realities and being cared for through human and more-than-human encounters in public spaces. This research demonstrated the ways in which PLWD were living through adversity in the built environment (“hopeful adaptation”), revealing innovative practices and structural barriers in suburban areas. Being able to access one's neighbourhood is a right, and this research highlights how certain socio-spatial characteristics of suburban neighbourhoods can, through a relational care lens, become a simultaneously caring and careless place.

COVID-19-related social support service closures and mental well-being in older adults and those affected by dementia: a UK longitudinal survey

BackgroundThe COVID-19 pandemic has had a major impact on delivery of social support services. This might be expected to particularly affect older adults and people living with dementia (PLWD), and...

Online forum advice for carers of people living with dementia: A discursive and conversation analytic exploration

Advice-giving and requesting is a complex interactional task that has been well-explored by the theoretical and analytical approaches of Discursive Psychology (DP) and Conversation Analysis (CA). However, these approaches have not previously been employed to analyse advice in the context of an online forum for carers of people living with dementia (PLWD). In this article I present how DP, with insights from both DP and CA research, can be employed to explore advice in the specific context of peer interaction on the Carers UK online forum. A single extract is presented as evidence for how a troubles-telling format can be employed to request advice in a way which places little obligation upon a potential commenter – a low-contingency request. As found in other research, this format resulted in advice being provided by commenters. The deontic and epistemic authority of the advice given by commenters will be used to display the sophistication with which commenters frame their advice to align to the indirect nature in which the advice was requested.

Practices, challenges, and opportunities when addressing the palliative care needs of people living with dementia: Specialty memory care provider perspectives.

IntroductionPalliative care focuses on reducing suffering and improving quality of life for individuals with serious illness and their families. In an effort to develop palliative care interventions for specialty memory care clinics, this study characterizes memory care providers’ perspectives on addressing palliative care needs of people living with dementia (PLWD).MethodsQualitative interviews with specialty memory care providers were followed by thematic analysis by a multidisciplinary research team.ResultsProvider approaches overlap with key domains of palliative care. Approaches unique to dementia include having a detailed understanding of dementia syndromes, behavioral symptoms, and caregiver burden. Challenges were identified related to disease progression, provider‐level factors, and systems and cultural issues. Respondents identified training needed to strengthen a palliative care approach.DiscussionThere are many strengths of using memory care teams to address palliative care needs of PLWD. However, they may require additional knowledge and training to strengthen their work.

Use of Humanoid Robot in Dementia Care: A Literature Review

Dementia is a prevalent age-related disease that affects an individual’s quality of life. Cognitive decline is the most common symptom of dementia that consequently causes problems with memory, language, and apathy, communication, thinking ability, difficulty in problem-solving and doing their daily living activities independently. In recent years, researchers have tried to improve the quality of life of people living with dementia by utilizing new technologies such as robots. This study aims to investigate specifically the application of humanoid robots in refuting the risk of dementia by focusing on three approaches: 1) cognitive-communication improvement, 2) psychomotor therapy, and 3) music therapy. The results indicate that having humanoid robots as companions may serve as an effective therapy that helps people living with dementia (PLwD) with their cognitive function, motor skills, language, and communication skill. It also may decrease psychiatric symptoms by involving PLwD which will lead to improvement in their quality of life. The humanoid robots can also help reduce cognitive decline by helping PLwD perform exercises.

Initial Derivation of Positive Dementia-Related Observational Measures: A Descriptive Ethnography

Person-centered caregiving approaches emphasize efforts to protect and maintain the personhood of people living with dementia (PLWD). The influence on person-centered caregiving approaches on PLWD have predominantly focused on deficit-oriented outcomes, such as absence or reduction of behavioral symptoms. While important to quality of life, the absence of measurable “positive” responses to person-centered caregiving approaches limit opportunities to specify sensitive and meaningful outcome measures that more holistically represent PLWD’s care experiences as more than the absence of a negative outcome. To address these gaps, we conducted a secondary analysis of video-observations of PLWD (N=9) surrounding mealtime cares using a descriptive ethnographic approach. Our objectives were to descriptively summarize specific responsive behaviors demonstrated by PLWD surrounding person-centered caregiving interactions, specifying observable features of these responses and consider their utility in future video-observational research. Findings indicate PLWD contribute both verbal and non-verbal communication surrounding person-centered approaches which can be characterized as conversational (starting conversation, answering or asking questions), expressing preferences (indicating needs and preferences, agreeing or disagreeing, complying with or refusing caregiver requests, permission granting), emotional responses (mirroring caregivers’ emotions, demonstrating emotion e.g. smiling), and reflexive (mirroring of caregiver’s actions), with overlap between categories. Findings suggest that PLWD not only contribute and respond in meaningful ways to person-centered interactions, but also initiate a significant number of these interactions. This study contributes to a growing body of research and advocacy that examines the personhood and abilities of PLWD and establishes the utility of observational data in studying PLWD contributions.