People Living With Dementia Research Articles

Associations Between Low-Value Medication in Dementia and Healthcare Costs.

BackgroundLow-value medications (Lvm) provide little or no benefit to patients, may be harmful, and waste healthcare resources and costs. Although evidence from the literature indicates that Lvm is highly prevalent in dementia, evidence about the financial consequences of Lvm in dementia is limited. This study analyzed the association between receiving Lvm and healthcare costs from a public payers’ perspective.MethodsThis analysis is based on data of 516 community-dwelling people living with dementia (PwD). Fourteen Lvm were extracted from dementia-specific guidelines, the German equivalent of the Choosing Wisely campaign, and the PRISCUS list. Healthcare utilization was retrospectively assessed via face-to-face interviews with caregivers and monetarized by standardized unit costs. Associations between Lvm and healthcare costs were analyzed using multiple linear regression models.ResultsEvery third patient (n = 159, 31%) received Lvm. Low-value antiphlogistics, analgesics, anti-dementia drugs, sedatives and hypnotics, and antidepressants alone accounted for 77% of prescribed Lvm. PwD who received Lvm were significantly less cognitively impaired than those not receiving Lvm. Receiving Lvm was associated with higher medical care costs (b = 2959 €; 95% CI 1136–4783; p = 0.001), particularly due to higher hospitalization (b = 1911 €; 95% CI 376–3443; p = 0.015) and medication costs (b = 905 €; 95% CI 454–1357; p < 0.001).ConclusionLvm were prevalent, more likely occurring in the early stages of dementia, and cause financial harm for payers due to higher direct medical care costs. Further research is required to derive measures to prevent cost-driving Lvm in primary care, that is, implementing deprescribing interventions and moving health expenditures towards higher value resource use.

“Bring me sunshine, bring me (physical) strength”: The case of dementia. Designing and implementing a virtual reality system for physical training during the COVID-19 pandemic

People living with Dementia (PwD) are amongst the most vulnerable populations in society, often depending on caregivers for their quality of life (QoL). Emerging research confirms the need for technological solutions to support non-pharmacological interventions that can enhance the QoL of PwD. This paper posits that Virtual Reality (VR) is a useful technology for boosting the physical training of PwD. In a study with PwD, we compared the conventional physical training PwD receive at a nursing home, against Semi Immersive VR (SIVR) and Fully Immersive VR (FIVR) training paradigms. We recorded the emotional behaviour, task-specific metrics, and level of independence of PwD during the training. The presence and usability of the systefm by both medical staff and PwD was also assessed. Results indicated that FIVR can improve the training of PwD leading to more accurate execution of the exercises while preventing external distractions. Beyond the findings, this article discusses the opportunities, challenges, along with the feasibility and acceptability of VR, to facilitate physical training for PwD who reside in restricted health care environments.

Tailored, Community-Based Programs for People Living With Dementia and Their Family Caregiver.

People living with dementia (PLWD) have voiced a desire to remain in their home environment as long as possible; unfortunately, there is limited integrated person-and family-centered community support. To examine the need for tailored supports for PLWD and their family caregivers (caregiving dyad), a meeting was conducted in Spring 2020. Thirty key provincial stakeholders with diversity in geographic location, employer and/or organization, range of roles, and family representatives participated in the meeting. Stakeholders identified a series of gaps, including: (a) systemic gaps; (b) gaps between communities of practice; (c) underserved populations; (d) program content and delivery gaps; and (e) PLWD and family caregiver support gaps. With input from stakeholders, we highlighted the need for consistent resources for the caregiving dyad that are flexible, timely, and accessible, which are embedded in the community and led by qualified and trained staff. [Journal of Gerontological Nursing, 48(4), 26-32.].

‘I’m not a failure for asking for help’: A mixed method service evaluation of Strategies for Relatives (START) programme

The STrAtegies for RelaTives (START) programme was developed by Livingstone et al. (2014) to address the gap in NHS interventions available for carers of People Living With Dementia (PLWD) in the United Kingdom. Previous research by Conway and Straughan (2017) suggested that the programme was clinically effective in improving quality of life and carer stress for family members caring for those with dementia, within local NHS mental health services. The current study offers a mixed method evaluation of the START programme in the North East of England, including t-tests of pre- and post-outcome data (N= 24) and qualitative semi-structured interviews with carers of People Living With Dementia (n= 6). Outcome measures demonstrated statistically significant improvements in carer quality of life and wellbeing, as well as a significant reduction in carer strain, post intervention. Therefore, the findings offer further support as to the benefits of the START programme identified by previous research. During semi-structured interviews, carers described profound emotional changes captured in themes of reducing guilt, realising their caring abilities, and feeling more able to reach out for support. These benefits had not been captured during previous research by Conway and Straughan (2017). The results of this study provide further evidence of the benefits of the START programme within local NHS services in improving carer wellbeing.

Specifics of and training needs in the inter-professional home care ofpeople with dementia.

Introduction: Successful home care for people living with dementia (PLwD) allows them to live in their own home environment for as long as possible. Current findings indicate a need for further development of medical and nursing knowledge and skills in evidence-based collaborative care for these patients. Aim: To identify specifics of inter-professional care for PLwD and training needs of home care nurses and general practitioners involved in care. Method: A multi-perspective qualitative study was conducted, comprising focus groups as well as individual interviews. Focus groups and interviews followed a semi-structured topic guide. Interview data was digitally recorded and transcribed verbatim, followed by a thematic framework analysis. Results: The sample consisted of nine nurses, one medical assistant, three general practitioners and nine family caregivers of PLwD. Five themes related to inter-professional home care were inductively developed: challenges in outpatient dementia care, challenges in collaboration, insufficient healthcare infrastructure, competencies needed in dementia care, and training requirements. Challenges were a lacking flow of information as well as continuity and organization of care. Home care nurses and family caregivers complained about missing communication skills in health professionals involved in the care of PLwD. Conclusions: The interviews revealed heterogeneous training needs of home care nursing staff and general practitioners that can be addressed by an inter-professional training course.

"Captive by the Uncertainty"-Experiences with Anticipatory Guidance for People Living with Dementia and Their Caregivers at a Specialty Dementia Clinic.

After a diagnosis of Alzheimer's disease and related disorders, people living with dementia (PWD) and caregivers wonder what disease trajectory to expect and how to plan for functional and cognitive decline. This qualitative study aimed to identify patient and caregiver experiences receiving anticipatory guidance about dementia from a specialty dementia clinic. To examine PWD and caregiver perspectives on receiving anticipatory guidance from a specialty dementia clinic. We conducted semi-structured interviews with PWD, and active and bereaved family caregivers, recruited from a specialty dementia clinic. Interviews were recorded, transcribed, and systematically summarized. Thematic analysis identified anticipatory guidance received from clinical or non-clinical sources and areas where respondents wanted additional guidance. Of 40 participants, 9 were PWD, 16 were active caregivers, and 15 were bereaved caregivers. PWD had a mean age of 75 and were primarily male (n = 6/9); caregivers had a mean age of 67 and were primarily female (n = 21/31). Participants felt they received incomplete or "hesitant" guidance on prognosis and expected disease course via their clinicians and filled the gap with information they found via the internet, books, and support groups. They appreciated guidance on behavioral, safety, and communication issues from clinicians, but found more timely and advance guidance from other non-clinical sources. Guidance on legal and financial planning was primarily identified through non-clinical sources. PWD and caregivers want more information about expected disease course, prognosis, and help planning after diagnosis. Clinicians have an opportunity to improve anticipatory guidance communication and subsequent care provision.

Development and Validity Testing of a Dementia Family Caregiver Pain Assessment Survey

PURPOSE: Untreated pain in people living with dementia (PLWD) results in negative patient outcomes: aggression, depression, and sleep disturbances. Gaps exist for understanding family caregiver pain assessment for PLWD. In this survey development study, we aimed to develop questions to measure the frequency with which family caregivers of PLWD use elements of pain assessment and sought to establish the content and face validity of these questions. Institutional Review Board approval was obtained.

Faces of Pain in Dementia: Learnings From a Real-World Study Using a Technology-Enabled Pain Assessment Tool.

Pain is common in people living with dementia (PLWD), including those with limited verbal skills. Facial expressions are key behavioral indicators of the pain experience in this group. However, there is a lack of real-world studies to report the prevalence and associations of pain-relevant facial micro-expressions in PLWD. In this observational retrospective study, pain-related facial features were studied in a sample of 3,144 PLWD [mean age 83.3 years (SD = 9.0); 59.0% female] using the Face domain of PainChek®, a point-of-care medical device application. Pain assessments were completed by 389 users from two national dementia-specific care programs and 34 Australian aged care homes. Our analysis focused on the frequency, distribution, and associations of facial action units [AU(s)] with respect to various pain intensity groups. A total of 22,194 pain assessments were completed. Of the AUs present, AU7 (eyelid tightening) was the most frequent facial expression (48.6%) detected, followed by AU43 (closing eyes; 42.9%) and AU6 (cheek raising; 42.1%) during severe pain. AU20 (horizontal mouth stretch) was the most predictive facial action of higher pain scores. Eye-related AUs (AU6, AU7, AU43) and brow-related AUs (AU4) were more common than mouth-related AUs (e.g., AU20, AU25) during higher pain intensities. No significant effect was found for age or gender. These findings offer further understanding of facial expressions during clinical pain in PLWD and confirm the usefulness of artificial intelligence (AI)-enabled real-time analysis of the face as part of the assessment of pain in aged care clinical practice.

Working in a care home during the COVID-19 pandemic: How has the pandemic changed working practices? A qualitative study

BackgroundThe pandemic has significantly affected care homes’ residents and families through the national visiting restrictions. However, less is known on the impact these changes have had on the care home workforce. The aim of this research was to explore the impact of COVID-19 on the working practices of care home staff, caring for people living with dementia.MethodsRemote qualitative, semi-structured interviews were conducted with care home staff caring for people living with dementia (PLWD) in the UK.ResultsParticipants were recruited to the larger programme of research via convenience sampling. Interviews were conducted via telephone or online platforms. This research employed inductive thematic analysis. Sixteen care home staff were included in this study. Three overarching themes were developed from the analysis that conveyed changes to the everyday working practices of the care home workforce and the impact such changes posed to staff wellbeing: (1) Practical implications of working in a care home during the COVID-19 pandemic; (2); Staff values and changes to the staff roles (3): Impact to the care home staff and concerns for the care sector.ConclusionsThe COVID-19 pandemic has significantly disrupted the daily working practices of care home staff, with staff forced to adopt additional roles on top of increased workloads to compensate for the loss of external agencies and support. Support and guidance must be offered urgently to inform care home staff on how to best adapt to their new working practices, ensuring that they are adequately trained.

Impact of home healthcare on end-of-life outcomes for people with dementia: a systematic review

BackgroundHome healthcare (HHC) comprises clinical services provided by medical professionals for people living at home with various levels of care needs and health conditions. HHC may reduce care transitions from home to acute hospitals, but its long-term impact on homebound people living with dementia (PLWD) towards end-of-life remains unclear. We aim to describe the impact of HHC on acute healthcare utilization and end-of-life outcomes in PLWD.MethodsDesign: Systematic review of quantitative and qualitative original studies which examine the association between HHC and targeted outcomes. Interventions: HHC. Participants: At least 80% of study participants had dementia and lived at home. Measurements: Primary outcome was acute healthcare utilization in the last year of life. Secondary outcomes included hospice palliative care, advance care planning, continuity of care, and place of death. We briefly reviewed selected national policy to provide contextual information regarding these outcomes.ResultsFrom 6831 articles initially identified, we included five studies comprising data on 4493 participants from USA, Japan, and Italy. No included studies received a “high” quality rating. We synthesised core properties related to HHC at three implementational levels. Micro-level: HHC may be associated with a lower risk of acute healthcare utilization in the early period (e.g., last 90 days before death) and a higher risk in the late period (e.g. last 15 days) of the disease trajectory toward end-of-life in PLWD. HHC may increase palliative care referrals. Advance care planning was an important factor influencing end-of-life outcomes. Meso-level: challenges for HHC providers in medical decision-making and initiating palliative care for PLWD at the end-of-life may require further training and external support. Coordination between HHC and social care is highlighted but not well examined. Macro-level: reforms of national policy or financial schemes are found in some countries but the effects are not clearly understood.ConclusionsThis review highlights the dearth of dementia-specific research regarding the impact of HHC on end-of-life outcomes. Effects of advance care planning during HHC, the integration between health and social care, and coordination between primary HHC and specialist geriatric/ palliative care services require further investigation.

Polypharmacy Among People Living with Dementia - Israel and 24 Countries in European Union, 2015-2019.

With a growing number of people living with dementia (PLWD), the practice of taking multiple medications to manage symptoms or comorbidities, i.e., polypharmacy, among PLWD has become a global health challenge. In 2015-2019, polypharmacy for PLWD varied substantially among 25 studied countries, with approximately 1 in 5 Estonian PLWD and 4 in 5 Cypriot PLWD having polypharmacy. In addition, Switzerland, Poland, Austria, and the Czech Republic have experienced a significantly increasing trend in polypharmacy for PLWD. Countries should pay special attention to polypharmacy and make efforts to control polypharmacy among PLWD, especially in countries where the trend of polypharmacy among PLWD has been increasing.

POSC382 Patient Relevant Criteria of Person-Centered Care for Community-Dwelling People with Dementia: A Formative Qualitative Study to Design a Quantitative Preference Study

For people living with Dementia (PwD), Person-Centered Care (PCC) is emphasized. PCC requires knowledge about patient preferences. This formative qualitative study aimed to identify patient-relevant criteria and sub-criteria of PCC for PwD, to design a quantitative preference study. After an initial focus group interview with n=2 Dementia Care Managers to ensure comprehensibility, we conducted individual interviews with n=10 PwD and n=3 informal caregivers (CGs). The interviews followed a semi-structured interview guide including a card game. The cards showed 12 criteria and 12x3 sub-criteria of PCC identified by a previous systematic review. Criteria-cards were shown to the PwD to explore their conception of the 12 criteria of PCC. Subsequently, PwD had to sort and rank the cards to identify the most important criteria of PCC. Interviews were recorded and transcribed verbatim. Two reviewers coded and analyzed the transcripts with qualitative content analysis. Ranking results from the individual card games were coded on a 10-point scale, whereupon sums and means for criteria across interviews were calculated. Analyses were discussed in a final meeting with the research team until consensus. Six patient-relevant criteria with each two sub-criteria of PCC for PwD emerged from the participant’s elaborations and card games; social relationships (indirect contact, direct contact), cognitive training (passive, active), organization of care (decentralized structures & no shared decision-making, centralized structures & shared decision-making), assistance with daily activities (professional, family member), characteristics of professional CG (empathy, education & work experience) and physical activities (alone, group). Our study provides evidence about patient-relevant criteria and sub-criteria of PCC for PwD to design a quantitative preference study. PwD had preferences for PCC and could express them. Future research should pay particular attention to dementia-sensitive wording and the balance between comprehensibility vs. realizability, completeness, independence and relevance of the criteria and sub-criteria in this population.

POSA118 Low-Value Care Among People Living with Dementia and Its Association with Healthcare Resource Utilization and Costs

Low-value care (Lvc) is defined as care unlikely to provide a benefit to the patient regarding the patient's preferences, potential harms, costs, or available alternatives. However, little is known about the economic harms of Lvc among people living with dementia (PwD). Avoiding Lvc and promoting recommended evidence-based treatments, referred to as high-value care (Hvc), could improve care for PwD within the same budget. This study aims to determine differences in health resource utilization and costs among PwD who received Lvc or Hvc, and to analyze the associations between healthcare costs and the respective treatment group.

POSA422 Preferences for Person-Centred Care Among People with Dementia in Comparison to Physician's Judgments: Study Protocol for the Predemcare Study

For People living with Dementia (PwD), Person-Centered Care (PCC) is emphasized. PCC requires knowledge about patient preferences. Data about quantitative preferences for dementia care, which would allow a quantification, weighting and ranking of patient-relevant criteria, are limited. Likewise, physician's judgments about PCC for PwD need to be known, as a divergence between patient preferences and physician’s judgements would decrease the chance of viable value-based person-centered dementia care.

Hearing Assessment and Rehabilitation for People Living With Dementia.

Hearing impairment commonly co-occurs with dementia. Audiologists, therefore, need to be prepared to address the specific needs of people living with dementia (PwD). PwD have needs in terms of dementia-friendly clinical settings, assessments, and rehabilitation strategies tailored to support individual requirements that depend on social context, personality, background, and health-related factors, as well as audiometric HL and experience with hearing assistance. Audiologists typically receive limited specialist training in assisting PwD and professional guidance for audiologists is scarce. The aim of this review was to outline best practice recommendations for the assessment and rehabilitation of hearing impairment for PwD with reference to the current evidence base. These recommendations, written by audiology, psychology, speech-language, and dementia nursing professionals, also highlight areas of research need. The review is aimed at hearing care professionals and includes practical recommendations for adapting audiological procedures and processes for the needs of PwD.

The Impact of Demographic, Socio-Economic and Geographic Factors on Mortality Risk among People Living with Dementia in England (2002-2016).

Increasing numbers of people living with dementia (PLWD), and a pressured health and social care system, will exacerbate inequalities in mortality for PLWD. There is a dearth of research examining multiple factors in mortality risk among PLWD, including application of large administrative datasets to investigate these issues. This study explored variation mortality risk variation among people diagnosed with dementia between 2002–2016, based on: age, sex, ethnicity, deprivation, geography and general practice (GP) contacts. Data were derived from electronic health records from a cohort of Clinical Practice Research Datalink GP patients in England (n = 142,340). Cox proportional hazards regression modelled mortality risk separately for people with early- and later- onset dementia. Few social inequalities were observed in early-onset dementia; men had greater risk of mortality. For early- and later-onset, higher rates of GP observations—and for later-onset only dementia medications—are associated with increased mortality risk. Social inequalities were evident in later-onset dementia. Accounting for other explanatory factors, Black and Mixed/Other ethnicity groups had lower mortality risk, more deprived areas had greater mortality risk, and higher mortality was observed in North East, South Central and South West GP regions. This study provides novel evidence of the extent of mortality risk inequalities among PLWD. Variance in mortality risk was observed by social, demographic and geographic factors, and frequency of GP contact. Findings illustrate need for greater person-centred care discussions, prioritising tackling inequalities among PLWD. Future research should explore more outcomes for PLWD, and more explanatory factors of health outcomes.

Friendship and Loneliness Among People Living With Dementia: Social Practices and Identity

More people living with dementia (PLWD) are aging in place in the community. The number of PLWD aging in community is estimated to comprise 61-81% of the total number of PLWD in North America. Since most PLWD do not drive (Foley et al., 2000), many may (or may not) spend much of their time closer to home, barring occasional visits out of town. Yet, one’s everyday environment may not always provide “ways of being in the world that are more accepting and embracing” (Hillman & Latimer, 2017) and kind, to the varied socio-cognitive struggles of PLWD. Meaningful relationships are required to support continued social participation and citizenship (Bartlett & O’Connor, 2007; Swinton, 2020). In addition to dementia diagnosis, these everyday experiences in community may significantly alter PLWD’s self-perception and confidence. PLWD may feel more or less comfortable forging relationships depending on their past experiences. In other words, the identity of PLWDs are often challenged and (re)constructed (Saunders et al., 2011). Amid persistent power imbalances, malignant social practices may reshape one’s identity such that social isolation, whether self-imposed and/or due to restrictions from others, appear the best way to tide over overwhelming loneliness. This symposium explores how community and friendships may intercept the formation of such lonely self-identity among PLWD. We use advanced qualitative methods to elucidate the varied experiences and challenges of PLWD in community. Findings from three perspectives, namely sociolinguistics, sociology, and social work, will be discussed identify new social practices to undo stigma and support PLWD in community.

Ethical and Methodological Considerations Interviewing Dementia Caregivers

Greater inclusion of people living with dementia (PLWD) and their caregivers in research is a global research priority and an expressed priority of dementia advocacy organizations. Absent inclusion of PLWD and caregivers, our understanding of dementia-related experiences and optimization of care and caregiving interventions is stymied. Qualitative interviewing techniques constitutes a primary method for obtaining PLWD and caregivers’ perspectives. Yet, there is little guidance on use of qualitative interviewing techniques among PLWD and caregivers or discussion of potential challenges encountered, despite unique vulnerabilities faced throughout the research process, which may be further heightened among historically excluded groups. Meaningful progress toward inclusion of PLWD and their caregivers in dementia research necessitates broader examination of associated methodological and ethical considerations that arise in the conduct of interviews. Drawing from a large multi-site qualitative study of dementia caregivers with exposure to high levels of social disadvantage, we used a multiple-triangulation qualitative approach across interview transcripts, memos, and interviewer discussions to identify methodological and ethical challenges that arose during the interviewing process. Challenges were identified across all phases of research, and included relational concerns with PLWD and family members due to disclosure of sensitive information, risk of re-traumatization in discussing past experiences, multiple roles of caregivers with conflicting perspectives, variable recall capacity, limited prior appraisal of caregiving, and request of interviewers for medical advice or selecting services . We outline events evidencing these challenges and proposed strategies (i.e. use of research consults, interview debriefing) to strengthen research capacity to anticipate and respond to them.

The Role of Caregiver Mastery in Anxiety Symptoms in People Living With Dementia

Anxiety symptoms in people living with dementia (PLWD) are the most distressing symptoms for caregivers. While caregiving is bidirectional relationship, little is known how caregivers can influence anxiety in PLWD. The purpose of this study was to examine the relationship between caregiver mastery and anxiety symptoms in PLWD. Secondary data analysis was conducted using baseline data from Healthy Patterns Study. The conceptual model of Factors Associated with Behavioral and Psychological Symptoms of Dementia guided this study. Among the 169 study PLWD, 23.1% (n=39) reported having anxiety symptoms. In a multivariate logistic regression, adjusting for age, dementia stage, sleep, and depression, better caregiver mastery was significantly related to lower odds of having anxiety in PLWD (OR=0.87, p=0.046). These results suggest that interventions aimed at improving caregiver mastery may improve anxiety symptoms in PLWD.

Friendship and Loneliness Among People Living With Dementia: Toward Community and Shared Humanity

An increasing number of people living with dementia (PLWD) age in community. In North America, this number ranges from 61-81% of the total number of PLWD. As many as one in three PLWD do not live with a care partner. Since most PLWD do not drive, many may spend a significant proportion of time within half a mile of their homes. Yet, the neighbourhood may or may not provide “ways of being in the world that are more accepting and embracing of the kinds of disruptions that dementia can produce” (Hillman & Latimer, 2017). To support continued social participation, meaningful everyday networks are required. PLWD and care partners may identify more or less strongly with a community depending on their position in the network, its spaces, and activities. According to Nancy (1991), “community” has been conjured as an antidote to the loneliness of the human condition, which explains its allure. In response, Costello (2014) argued that “community” requires one to constantly try and “fall short” in caring for another’s changing experiences. The value of a community thus depends on the quality of its friendships – the ability of otherwise lonely individuals to empathize – which may be threatened by challenges to PLWD’s personhood. This symposium brings together expertise in community gerontology, philosophy, and neuropsychology to advance current conceptualizations of personhood in community amid cognitive decline. These will be discussed in relation to lived experiences, with the aim to inform future research and practice of dementia care and prevention in community.