Feasibility of Routine Quality of Life Measurement for People Living With Dementia in Long-Term Care

ObjectivesMaximizing quality of life (QoL) is the ultimate goal of long-term dementia care. However, routine QoL measurement is rare in nursing home (NH) and assisted living (AL) facilities. Routine QoL measurement might lead to improvements in resident QoL. Our objective was to assess the feasibility of using DEMQOL-CH, completed by long-term care staff in video calls with researchers, to assess health-related quality of life (HrQoL) of NH and AL residents with dementia or other cognitive impairment.DesignCross-sectional study.Setting and ParticipantsWe included a convenience sample of 5 NHs and 5 AL facilities in the Canadian province of Alberta. Forty-two care staff who had worked in the facility for ≥3 months completed DEMQOL-CH assessments of 183 residents who had lived in the facility for 3 months or more and were aged ≥65 years. Sixteen residents were assessed independently by 2 care staff to assess inter-rater reliability.MethodsWe assessed HrQoL in people with dementia or other cognitive impairment using DEMQOL-CH, and assessed time to complete, inter-rater reliability, internal consistency reliability, and care staff ratings of feasibility of completing the DEMQOL-CH.ResultsAverage time to complete DEMQOL-CH was <5 minutes. Staff characteristics were not associated with time to complete or DEMQOL-CH scores. Inter-rater reliability [0.735, 95% confidence interval (CI): 0.712-0.780] and internal consistency reliability (0.834, 95% CI: 0.779-0.864) were high. The DEMQOL-CH score varied across residents (mean = 84.8, standard deviation = 11.20, 95% CI: 83.2-86.4). Care aides and managers rated use of the DEMQOL-CH as highly feasible, acceptable, and valuable.Conclusions and ImplicationsThis study provides a proof of concept that DEMQOL-CH can be used to assess HrQoL in NH and AL residents and provides initial indications of feasibility and resources required. DEMQOL-CH may be used to support actions to improve the QoL of residents.     

Burdensome Transitions at the End of Life Among Long-Term Care Residents With Dementia

ObjectivesThe purpose of the study was to examine the frequency of burdensome care transitions at the end of life, the difference between different types of residential care facilities, and the changes occurring between 2002 and 2008.DesignA nationwide, register-based retrospective study.SettingResidential care facilities offering long-term care, including traditional nursing homes, sheltered housing with 24-hour assistance, and long-term care facilities specialized in care for people with dementia.Study groupAll people in Finland who died at the age of 70 or older, had dementia, and were in residential care during their last months of life.Main outcome measuresThree types of potentially burdensome care transition: (1) any transition to another care facility in the last 3 days of life; (2) a lack of continuity with respect to a residential care facility before and after hospitalization in the last 90 days of life; (3) multiple hospitalizations (more than 2) in the last 90 days of life. The 3 types were studied separately and as a whole.ResultsOne-tenth (9.5%) had burdensome care transitions. Multiple hospitalizations in the last 90 days were the most frequent, followed by any transitions in the last 3 days of life. The frequency varied between residents who lived in different baseline care facilities being higher in sheltered housing and long-term specialist care for people with dementia than in traditional nursing homes. During the study years, the number of transitions fluctuated but showed a slight decrease since 2005.ConclusionsThe ongoing change in long-term care from institutional care to housing services causes major challenges to the continuity of end-of-life care. To guarantee good quality during the last days of life for people with dementia, the underlying reasons behind transitions at the end of life should be investigated more thoroughly.     

Optimal Emergency Department Care Practices for Persons Living With Dementia: A Scoping Review

ObjectivesTo summarize research on optimal emergency department (ED) care practices for persons living with dementia (PLWDs) and develop research priorities.DesignSystematic scoping review.Settings and ParticipantsPLWDs in the ED.MethodsThe following Patient-Intervention-Comparison-Outcome (PICO) questions were developed: PICO 1, What components of emergency department care improve patient-centered outcomes for persons with dementia? PICO 2, How do emergency care needs for persons with dementia differ from other patients in the emergency department? A scoping review was conducted following PRISMA-ScR guidelines and presented to the Geriatric Emergency care Applied Research 2.0 Advancing Dementia Care network to inform research priorities.ResultsFrom the 6348 publications identified, 23 were abstracted for PICO 1 and 26 were abstracted for PICO 2. Emergency care considerations for PLWDs included functional dependence, behavioral and psychological symptoms of dementia, and identification of and management of pain. Concerns regarding ED care processes, the ED environment, and meeting a PWLD's basic needs were described. A comprehensive geriatric assessment and dedicated ED unit, a home hospital program, and a low-stimulation bed shade and contact-free monitor all showed improvement in patient-centered or health care use outcomes. However, all were single-site studies evaluating different outcomes. These results informed the following research priorities: (1) training and dementia care competencies; (2) patient-centric and care partner–centric evaluation interventions; (3) the impact of community- and identity-based factors on ED care for PLWDs; (4) economic or other implementation science measures to address viability; and (5) environmental, operational, personnel, system, or policy changes to improve ED care for PLWDs.Conclusions and ImplicationsA wide range of components of both ED care practices and ED care needs for PLWDs have been studied. Although many interventions show positive results, the lack of depth and reproducible results prevent specific recommendations on best practices in ED care for PLWDs.     

Quality of Life and Pain Medication Use in Persons With Advanced Dementia Living in Long-Term Care Facilities

ObjectivesIn residents with dementia living in a long-term care facility (LTCF), un(der)treated pain may trigger behavioral disturbances, mood syndromes, and deterioration of physical functioning and self-maintenance. Because these factors can have considerable impact on the quality of life (QoL), this study aimed to (1) compare characteristics of persons with advanced dementia living in LTCFs with and without pain medication; (2) compare QoL in these persons with and without pain, stratified by type of pain medication use; and (3) explore associations between the use of paracetamol and QoL in persons with advanced dementia living in LTCFs.Design and settingThis study analyzed baseline data from the Communication, Systematic Assessment and Treatment of Pain, Medication Review, Occupational Therapy, and Safety Study; a multicenter, cluster-randomized effectiveness-implementation clinical hybrid trial in 67 Norwegian LTCF clusters.ParticipantsIn total, 407 LTCF residents (rural and urban areas) aged ≥65 years, with Functional Assessment Staging scores of 5–7 (ie, moderate to advanced dementia).Main outcome measureQoL as assessed by the 6 QUALIDEM (validated questionnaire to measure QoL in persons with dementia living in LTCF) domains applicable to persons with moderate to severe dementia. The association between QoL and paracetamol was estimated using linear mixed-effect models, adjusting for confounding variables.Results62.0% used pain medication (paracetamol, opioids, or both). QoL was lower in residents using pain medication, compared with those without pain medication [mean QUALIDEM score 68.8 (standard deviation 17.4 vs) 75.5 (standard deviation 14.6), respectively, P < .001). Multilevel analysis showed that paracetamol use was not associated with QoL.Conclusions and ImplicationsPersons with advanced dementia living in LTCF using pain medication have a lower QoL compared with those not using pain medication. These results are of key importance for the clinician because they stress the need for regular medication review and pain management. When measured cross-sectionally, use of paracetamol is not associated with increased QoL.     

Caring for a Relative With Dementia in Long-Term Care During COVID-19

ObjectivesThe COVID-19 pandemic created unique stressors for caregivers of persons with dementia living in long-term care (LTC) facilities. The purpose of this qualitative study was to identify the challenges associated with caring for a relative with dementia in LTC during the pandemic, as well as resources, strategies, and practices caregivers found helpful in coping with COVID-19.DesignThis study was conducted within the context of an ongoing randomized controlled trial of a psychosocial intervention to support caregivers. Open-ended survey responses (n = 125) and semistructured interviews with a subset of the sample (n = 20) collected between June 2020 and June 2021 explored caregivers' experiences during COVID-19.Setting and ParticipantsParticipants included 125 family caregivers of persons with dementia living in residential LTC.MethodsThematic analysis was used to identify themes capturing caregivers' experiences.ResultsIn addition to concerns about COVID-19 infection, participants reported key challenges such as the difficulty of maintaining contact with relatives because of visiting restrictions, lack of information about relatives' health and well-being, worries about overburdened LTC staff, impossibility of returning relatives home from the LTC facility, and fears about relatives dying alone. Participants also identified resources, strategies, and practices that they perceived as helpful, including effective infection prevention within the LTC facility, good communication with LTC staff, and creative strategies for connecting with their relatives.Conclusions and ImplicationsThis qualitative analysis informs recommendations for practice within LTC facilities, as well as supports that may help caregivers manage stressful situations in the context of COVID-19. Vaccination and testing protocols should be implemented to maximize family caregivers' opportunities for in-person contact with relatives in LTC, as alternative visiting modalities were often unsatisfactory or unfeasible. Informing caregivers regularly about individual residents' needs and status is crucial. Supports for bereaved caregivers should address complicated grief and feelings of loss.     

ECHO-AGE: An Innovative Model of Geriatric Care for Long-Term Care Residents With Dementia and Behavioral Issues

ObjectivesTo design, implement, and assess the pilot phase of an innovative, remote case-based video-consultation program called ECHO-AGE that links experts in the management of behavior disorders in patients with dementia to nursing home care providers.DesignPilot study involving surveying of participating long-term care sites regarding utility of recommendations and resident outcomes.SettingEleven long-term care sites in Massachusetts and Maine.ParticipantsAn interprofessional specialty team at a tertiary care center and staff from 11 long-term care sites.InterventionLong-term care sites presented challenging cases regarding residents with dementia and/or delirium related behavioral issues to specialists via video-conferencing.MethodsBaseline resident characteristics and follow-up data regarding compliance with ECHO-AGE recommendations, resident improvement, hospitalization, and mortality were collected from the long-term care sites.ResultsForty-seven residents, with a mean age of 82 years, were presented during the ECHO-AGE pilot period. Eighty-three percent of residents had a history of dementia and 44% were taking antipsychotic medications. The most common reasons for presentation were agitation, intrusiveness, and paranoia. Behavioral plans were recommended in 72.3% of patients. Suggestions for medication adjustments were also frequent. ECHO-AGE recommendations were completely or partially followed in 88.6% of residents. When recommendations were followed, sites were much more likely to report clinical improvement (74% vs 20%, P < .03). Hospitalization was also less common among residents for whom recommendations were followed.ConclusionsThe results suggest that a case-based video-consultation program can be successful in improving the care of elders with dementia and/or delirium related behavioral issues by linking specialists with long-term care providers.     

Living Better With Dementia: Strengths-Based Social Work Practice and Dementia Care

This article first argues that quality of life is possible despite the onset of dementia in late life. It also demonstrates how core concepts of social work practice, such as family systems theory, the strengths perspective, and use of self, can be applied to practice with dementia-affected persons. In addition, it provides practical suggestions for supporting care partners in nurturing “we-ness”, focusing on what remains rather than was is lost, and remaining authentic. When strengths-based social work practice is integrated into dementia care protocols, wellbeing can increase. As a result, the more than 40 million persons worldwide who are affected by dementia do not have to resign themselves to the despair, devastation and inevitable demise of quality of life that dominate perception of the illness.     

Advancing Research on Care Needs and Supportive Approaches for Persons With Dementia: Recommendations and Rationale

The first National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers was held on October 16-17, 2017, at the National Institutes of Health. In this paper, participants from the Summit Session on Research on Care Needs and Supportive Approaches for Persons with Dementia summarize the state of the science, identify gaps in knowledge, and offer recommendations to improve science and practice in long-term care. Recommendations cover 4 areas focused on persons living with dementia: (1) symptoms (behavioral and psychological symptoms of dementia, function, cognition, and sleep); (2) dementia care settings (physical and social environments, home, and residential care); (3) living with dementia (living well with dementia, living alone with dementia, and living with dementia and intellectual and developmental disabilities); and (4) technology as a cross-cutting theme. The participants identify 10 of the most pressing research issues based on the findings from their collective papers. Final Summit recommendations included those presented by session participants and will be used to advise federal agencies and other organizations that fund research.     

Reliability and Validity of the Care Plan Checklist for Evidence of Person-Centered Approaches for Behavioral and Psychological Symptoms Associated With Dementia

Purpose

The purpose of this study was to test the reliability and validity of the Care Plan Checklist for Evidence of Person-Centered Approaches for Behavioral and Psychological Symptoms Associated with Dementia (BPSD).

Delivering Person-Centered Care: Important Preferences for Recipients of Long-term Services and Supports

Objectives

Although assessing individual consumer preferences are an important first step in providing person-centered care, the purpose of this study was to identify the top 10 shared preferences that are important to a majority of consumers receiving long-term services and supports.

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.     

Effectiveness of Hearing Rehabilitation for Care Home Residents With Dementia: A Systematic Review

ObjectivesTo report the effectiveness of, and barriers and facilitators to, hearing rehabilitation for care home residents with dementia.DesignSystematic review.Setting and ParticipantsCare home residents with dementia and hearing loss.MethodsNo restrictions on publication date or language were set and gray literature was considered. Eligible studies were critically appraised and presented via a narrative review.ResultsSixteen studies, most of low to moderate quality, were identified. Hearing rehabilitation, including hearing devices, communication techniques, and visual aids (eg, flashcards), was reported to improve residents' communication and quality of life and reduce agitation, with improvements in staff knowledge of hearing loss and job satisfaction. Residents' symptoms of dementia presented barriers, for example, losing or not tolerating hearing aids. Low staff prioritization of hearing loss due to time pressures and lack of hearing-related training for staff were further barriers, particularly for residents who required assistance with hearing devices. Adopting a person-centered approach based on residents’ capabilities and preferences and involving family members facilitated hearing device use.Conclusions and ImplicationsResidents with dementia can benefit from hearing rehabilitation. Identifying and implementing efficient, individualized hearing rehabilitation is necessary for those with complex cognitive needs. Increased funding and support for the social care sector is required to address systemic issues that pose barriers to hearing rehabilitation, including time pressures, lack of training for staff and access to audiology services for residents.     

Applying Agile Methodology to Reengineer the Delivery of Person-Centered Care in a Nursing Home: A Case Study

Nursing home (NH) providers would benefit from adopting evidence-based measures for gathering and utilizing resident preference information in their daily care activities. However, providers face barriers when implementing assessment tools used to promote person-centered care (PCC). Although Agile methodology is not commonly used in NH settings, this case study shows how it can be used to achieve the goal of delivering preference-based, PCC, within a large NH. We present a road map for breaking down care processes, prioritizing, and implementing iterative plan, do, study, act cycles using Agile methodology to enhance group collaboration on quality improvement cycles, to achieve our goal of providing preference-based PCC. We first determined if care plans reflected each resident’s important preferences, developed a method for tracking whether residents attended activities that matched their preferences, and determined if residents were satisfied that their preferences were being met. These efforts had positive effects throughout the NH particularly when COVID-19 limited visitors and significantly modified staff workflow. Specifically, Agile processes helped staff to know how to honor preferences during quarantines which necessitated a shift to individualized (and not group) approaches for meeting preferences for social contact, comfort, and belonging. The ready availability of preference-based reporting was critical to quickly informing new staff on how to meet residents’ most important preferences. Based on lessons learned, we describe a developmental approach that other providers can consider for adoption. Implications of this work are discussed in terms of the need for provider training in Agile methodologies to support iterative improvements, the need for policies that reimburse providers for their efforts, and additional research around workflow processes.     

New Toolkit to Measure Quality of Person-Centered Care: Development and Pilot Evaluation With Nursing Home Communities

BackgroundIncreasingly, nursing home (NH) providers are adopting a person-centered care (PCC) philosophy; yet, they currently lack methods to measure their progress toward this goal. Few PCC tools meet criteria for ease of use and feasibility in NHs. The purpose of this article is to report on the development of the concept and measurement of preference congruence among NH residents (phase 1), its refinement into a set of quality indicators by Advancing Excellence in America's Nursing Homes (phase 2), and its pilot evaluation in a sample of 12 early adopting NHs prior to national rollout (phase 3). The recommended toolkit for providers to use to measure PCC consists of (1) interview materials for 16 personal care and activity preferences from Minimum Data Set 3.0, plus follow-up questions that ask residents how satisfied they are with fulfillment of important preferences; and (2) an easy to use Excel spreadsheet that calculates graphic displays of quality measures of preference congruence and care conference attendance for an individual, household or NH. Twelve NHs interviewed residents (N = 146) using the toolkit; 10 also completed a follow-up survey and 9 took part in an interview evaluating their experience.ResultsNH staff gave strong positive ratings to the toolkit. All would recommend it to other NHs. Staff reported that the toolkit helped them identify opportunities to improve PCC (100%), and found that the Excel tool was comprehensive (100%), easy to use (90%), and provided high quality information (100%). Providers anticipated using the toolkit to strengthen staff training as well as to enhance care planning, programming and quality improvement.ConclusionsThe no-cost PCC toolkit provides a new means to measure the quality of PCC delivery. As of February 2014, over 700 nursing homes have selected the Advancing Excellence in America's Nursing Homes PCC goal as a focus for quality improvement. The toolkit enables providers to incorporate quality improvement by moving beyond anecdote, and advancing more systematically toward honoring resident preferences.     

Preventing Fractures in Long-Term Care: Translating Recommendations to Clinical Practice

The Ontario Osteoporosis Strategy for long-term care (LTC) aims to support fracture risk-reduction. LTC specific recommendations for fracture prevention were developed in 2015. This article describes the use of the Knowledge-to Action framework to guide the development and application of research evidence on fracture prevention in older adults. Knowledge translation activities highlighted fractures as a significant source of morbidity in LTC, significant gaps in fracture risk assessment and treatment, and barriers and facilitators to guideline implementation. Multifaceted knowledge translation strategies, targeting staff in LTC homes in Ontario, Canada to support fracture guideline implementation have included education, audit and feedback, team-based action planning, and engagement of LTC residents, their families, and health professionals. Provincial administrative databases were accessed to monitor fracture rates between 2005 and 2015. Our research has identified enablers and barriers to knowledge use such as limited knowledge of osteoporosis, fracture risk, and prevention. Province-wide over a 10-year period, hip fracture rates in LTC decreased from 2.3% to 1.9%, and any fracture rates decreased from 4% to 3.6%. This body of work suggests that multifaceted knowledge translation initiatives are feasible to implement in LTC and can improve the uptake of clinical recommendations for fracture prevention. A key aspect of our fracture prevention knowledge translation activities has been the full engagement of key stakeholders to assist in the co-development and design of knowledge translation products.     

Long-Term Care Planning and Preparation Among Persons with Multiple Sclerosis

Individuals with multiple sclerosis (MS) primarily rely on informal supports such as family members and assistive technology to meet their daily needs. As they age, formal supports may become important to compliment these supports and sustain community-based living. No previous research exists exploring plans and preparations of persons with MS for future independent living and long-term care needs. We analyzed data from a random sample survey (N?=?580) to assess knowledge and perceptions of future service needs using ANOVA, chi-square, correlations, and MANOVA procedures. Results indicate that overall, most respondents are not well informed and have not planned or prepared for future care needs. Persons reporting severe MS were more likely to plan and prepare. Key “entry points” for making preparations include receiving specific education and planning information, discussions with family and professional service providers, and increased age, education, and income. We recommend greater infusion of long-term care planning into these existing entry points and creation of new entry points including healthcare provides and insurers.