Dementia Special Care Research Articles

Apathy: Risk Factor for Mortality in Nursing Home Patients.

To determine the prognostic value of apathy for mortality in patients of somatic (SC) and dementia special care (DSC) nursing home (NH) units. Longitudinal design, secondary analyses of a 2-year, cluster-randomized trial with six measurements, approximately 4months in between. SC and DSC-units of Dutch NHs. NH-patients of seventeen SC-units (n=342) and sixteen DCS-units (n=371). Data were available for 713 NH-patients, 266 of whom died during the study. Apathy was assessed using the 10-item Apathy Evaluation Scale (AES-10) and applied as categorical variable using known cut-off scores as well as dimensional variable. Additionally, depressive symptoms were assessed using the Cornell Scale for Depression in Dementia. Mixed effects cox models using the coxme package in R revealed a higher risk of mortality between two measurements, if apathy was present (hazard ratio (HR)=1.77; 95% confidence interval (CI]=1.35-2.31, P<.001). Results remained significant (HR=1.64; 95% CI=1.23-2.19, P<.001) when controlled for depressive symptoms. DSC-units and SC-units did not differ (P>.05) in the effect of apathy on mortality. Male gender (HR=1.67; 95% CI=1.23-2.27, P<.001), and higher age in years (HR=1.06; 95% CI=1.04-1.08, P<.001) were also predictors of mortality. Regarding apathy as a dimensional construct, one standard deviation increase of AES-10 scores was associated with a 62% increase of mortality risk (HR=1.62, 95% CI=1.40-1.88, P<.001). Apathy was associated with mortality over a 4-month period in NH patients, even when controlling for depression. These data suggest that screening and treatment strategies for apathy should be developed for this patient population.

A Humanist in the House of Old: Moyra Jones and Early Dementia Care in Canada

The history of gerontology and the experience of aging in Canada is still largely unwritten. This article employs the personal and career biography of British Columbian rehabilitation and dementia care specialist Moyra Jones, an active member in this field of care from the 1960s until the new millennium. I explore how gender, professionalism, treatment options, and emerging ideas about the personhood of individuals with dementia shaped gerontological ideas and practices in the late twentieth century.

The relative impact of symptoms, resident characteristics and features of nursing homes on residents’ participation in social occupations: Cross-sectional findings from U-Age Swenis

ABSTRACTSocial occupations have been described as meaningful occupations, and a determinant of health in old age. With ageing populations, and increased need for nursing home care, it is therefore important to support participation in social occupations in nursing homes. However, the limited evidence on factors that may have an impact on nursing home residents’ participation in social occupations makes it difficult to know how and when to support their participation and who to target. Therefore, the aim of this study was to explore the impact of symptoms, resident characteristics and features of nursing homes on residents’ participation in social occupations. In a sample of 4,451 nursing home residents, the average number of social occupations participated in during the week preceding data collection was 5.8. Additionally, participation in social occupations was positively influenced by fewer symptoms of cognitive impairment, female sex, shorter length of stay, and living in a dementia specific care unit. The study thereby contributes with knowledge on populations at risk for occupational deprivation, and implications for understanding who to target with interventions to promote social occupations and when. However, very little is known about how to design interventions to support nursing home residents’ occupational opportunities, and what occupations they desire and need. Further research is therefore needed to identify nursing home residents’ occupational opportunities, wishes and needs in relation to environmental barriers, individual characteristics, and individual choice.

Admiral Nursing: combining specialist dementia and hospice care

Admiral Nursing: combining specialist dementia and hospice care

Developing the Senses Framework to support relationship-centred care for people with advanced dementia until the end of life in care homes.

People with advanced dementia living in care homes can experience social death before their physical death. Social death occurs when a person is no longer recognised as being an active agent within their relationships. A shift is required in how we perceive people with advanced dementia so that the ways they continue to be active in their relationships are noticed. Paying attention to embodied and interembodied selfhood broadens the scope and opportunities for relationships with people with advanced dementia, acting as a counter to social death. This has the potential to improve the quality of care, including end of life care, of people with advanced dementia in care homes. This study examined the role of embodied and interembodied selfhood within care-giving/care-receiving relationships in a specialist dementia care home. Empirical findings and their implications for the development of relationship-centred care and the Senses Framework in care homes are discussed.

Improving care for people with dementia: development and initial feasibility study for evaluation of life story work in dementia care

BackgroundImproving dementia care quality is an urgent priority nationally and internationally. Life story work (LSW) is an intervention that aims to improve individual outcomes and care for people with dementia and their carers. LSW gathers information and artefacts about the person, their history and interests, and produces a tangible output: the ‘life story’.ObjectiveTo establish whether or not full evaluation of LSW was feasible.DesignMixed-methods feasibility study.MethodsIn-depth interviews and focus groups explored experiences of LSW and best practice with people with dementia, family members and dementia care staff. A systematic review explored best practice and theories of change for LSW. These stages helped to identify the outcomes and resources to explore in the feasibility study. A representative sample survey of health and social care dementia care providers in England established LSW practice in different settings. A survey of a self-selected sample of family members of people with dementia explored how LSW is experienced. Two small outcome studies (stepped-wedge study in six care homes and pre-test post-test study in inpatient specialist dementia care wards) explored the feasibility of full evaluation of LSW in these settings.SettingsSurvey: generalist and specialist care homes; NHS dementia care settings; and community dementia services. Feasibility study: care homes and NHS inpatient dementia care wards.ParticipantsNHS and social care services, people with dementia, family carers, care home staff and NHS staff.InterventionsLSW.Main outcome measuresSpread of LSW and good practice, quality of life (QoL) for the person with dementia and carers, relationships between people with dementia and family carers, staff attitudes about dementia, staff burnout, resource use and costs.Review methodsNarrative review and synthesis, following Centre for Review and Dissemination guidelines.ResultsGood practice in LSW is identifiable, as are theories of change about how it might affect given outcomes. Indicators of best practice were produced. LSW is spreading but practice and use vary between care settings and are not always in line with identified good practice. Two different models of LSW are evident; these are likely to be appropriate at different stages of the dementia journey. The feasibility study showed some positive changes in staff attitudes towards dementia and, for some people with dementia, improvements in QoL. These may be attributable to LSW but these potential benefits require full evaluation. The feasibility work established the likely costs of LSW and highlighted the challenges of future evaluation in care homes and inpatient dementia care settings.LimitationsThere was insufficient evidence in the literature to allow estimation of outcome size. We did not carry out planned Markov chain modelling to inform decisions about carrying out future evaluation because of the dearth of outcome data in the literature; low levels of data return for people with dementia in the hospital settings; lack of detected effect for most people with dementia; and questions about implementation in the research settings.ConclusionsLSW is used across different health and social care settings in England, but in different ways, not all of which reflect ‘good practice’. This large, complex study identified a wide range of challenges for future research, but also the possibility that LSW may help to improve care staff attitudes towards dementia and QoL for some people with dementia.Future workFull evaluation of LSW as an intervention to improve staff attitudes and care is feasible with researchers based in or very close to care settings to ensure high-quality data collection.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

Quality of life assessments in nursing homes revealed a tendency of proxies to moderate patients' self-reports

ObjectiveResearch into different patient populations suggests that, on average, proxies report poorer health-related quality of life (HRQoL) compared to self-reports. We aimed to investigate whether the difference between proxy reports and self-reports (interrater gap) varies across the whole range of self-reports from low to high HRQoL scores. Study Design and SettingA cross-sectional study in 16 Dutch nursing home (NH) dementia special care (DSC) units (n = 256) and 17 somatic units (n = 326). Professional carers, blinded to self-reports, provided EuroQol-5D scores from two perspectives: their own perspective (proxy–proxy) of the patients' HRQoL and the estimation of the patient's view (proxy–patient). ResultsThe interrater gap varied linearly in both DSC and somatic patients from proxy scores overestimating low self-reports to proxy scores underestimating high self-reports. This attenuation tendency existed for both proxy–proxy and proxy–patient perspectives. The interrater gap tended to be smaller for the proxy–patient perspective. ConclusionsProxies (professional carers) tend to attenuate self-reports in NH patients with and without dementia toward moderate scores rather than report systematically poorer HRQoL. A proxy–patient perspective may be preferable to a proxy–proxy perspective for the purpose of estimating self-reports. Further research into other populations is needed to understand whether the attenuation tendency is a general phenomenon.

BRIDGING THE GAP: PROVIDING SPECIALIZED DEMENTIA CARE AND SUPPORTIVE SERVICES THROUGH COMMUNITY PARTNERSHIPS (BGDCS-CP)

BRIDGING THE GAP: PROVIDING SPECIALIZED DEMENTIA CARE AND SUPPORTIVE SERVICES THROUGH COMMUNITY PARTNERSHIPS (BGDCS-CP)

Antipsychotic prescription amongst hospitalized patients with dementia.

Antipsychotic drugs are used to treat behavioural and psychological symptoms of dementia, despite significant safety concerns regarding increased risk of stroke and mortality. The numbers of patients with dementia and related behavioural symptoms being treated in acute hospitals is increasing. (i) to determine pre-admission and in-hospital prevalence of antipsychotic use in a national sample of patients with dementia and acute illness; (ii) identify reasons for antipsychotic use; (iii) assess features of the ward environment which impact on patients with dementia; (iv) determine availability of dementia-specific policies, training, appraisal and mentorship programs which influence service delivery. Four-part standardized audit in 35 public acute hospitals comprising (i) retrospective healthcare record review (n = 660); (ii) prospective assessment of ward environment (n = 77); (iii) ward organization interview with clinical managers (n = 77); (iv) hospital organisation interview with senior managers (n = 35). Antipsychotic drugs were prescribed to 29% of patients with dementia before hospitalization and to 41% during hospitalization; one quarter received new or additional prescriptions. Assessments for delirium (45%), dementia symptoms (39%), mood (26%), mental state (64%) and distress-provoking factors (3%) were suboptimal. Drug indications were documented in 78%. Non-pharmacological interventions were not documented. Most wards lacked environmental cues to promote orientation. Dementia-specific care pathways existed in 2 of 35 hospitals. Staff support and training programmes were suboptimal. 12% of patients were discharged with new antipsychotic prescriptions. Antipsychotic medications are commonly prescribed for hospitalized patients with dementia in Ireland. Ward environments and dementia-related governance structures are suboptimal.

Context, mechanisms and outcomes in end of life care for people with advanced dementia.

BackgroundThe majority of people with dementia in the UK die in care homes. The quality of end of life care in these environments is often suboptimal. The aim of the present study was to explore the context, mechanisms and outcomes for providing good palliative care to people with advanced dementia residing in UK care homes from the perspective of health and social care providers.MethodThe design of the study was qualitative which involved purposive sampling of health care professionals to undertake interactive interviews within a realist framework. Interviews were completed between September 2012 and October 2013 and were thematically analysed and then conceptualised according to context, mechanisms and outcomes. The settings were private care homes and services provided by the National Health Service including memory clinics, mental health and commissioning services in London, United Kingdom. The participants included 14 health and social care professionals including health care assistants, care home managers, commissioners for older adults’ services and nursing staff.ResultsGood palliative care for people with advanced dementia is underpinned by the prioritisation of psychosocial and spiritual care, developing relationships with family carers, addressing physical needs including symptom management and continuous, integrated care provided by a multidisciplinary team. Contextual factors that detract from good end of life care included: an emphasis on financial efficiency over person-centred care; a complex health and social care system, societal and family attitudes towards staff; staff training and experience, governance and bureaucratisation; complexity of dementia; advance care planning and staff characteristics. Mechanisms that influence the quality of end of life care include: level of health care professionals’ confidence, family uncertainty about end of life care, resources for improving end of life care and supporting families, and uncertainty about whether dementia specific palliative care is required.ConclusionsContextual factors regarding the care home environment may be obdurate and tend to negatively impact on the quality of end of life dementia care. Local level mechanisms may be more amenable to improvement. However, systemic changes to the care home environment are necessary to promote consistent, equitable and sustainable high quality end of life dementia care across the UK care home sector.

Differences in Case Conferences in Dementia Specific vs Traditional Care Units in German Nursing Homes: Results from a Cross-Sectional Study

ObjectivesTo investigate differences in the provision and performance of case conferences for people with dementia between dementia special care units (DSCUs) and traditional care units (TCUs) in nursing homes. Because DSCUs employ more staff, we expect the likelihood of the provision of case conferences to be higher in DSCUs. DesignObservational cross-sectional study. Residents from DSCUs and TCUs were compared using genetic propensity score matching over all of the observed potential covariates, including the characteristics that served as admission criteria for DSCUs. Because of the multisite structure of the data, clustering was accounted for with a generalized mixed model. SettingDSCUs are defined as units within nursing homes that offer care exclusively to residents with dementia and that charge higher rates for the specialized care provided. TCUs are defined as care units for residents with and without dementia. ParticipantsA matched sample was drawn out of a convenience sample of 1808 residents from 51 nursing homes. It consisted of 264 residents from 16 DSCUs and 264 residents from 48 TCUs. InterventionsNone. MeasurementsData regarding the provision of case conferences were collected by the nurses using the Dementia Care Questionnaire. Other collected data included challenging behavior (Neuropsychiatric Inventory Questionnaire), mobility (Physical Self-Maintenance Scale), cognitive impairment (Dementia Screening Scale), and sociodemographic information. ResultsIn the DSCU group, case conferences were provided to 91% (n = 224) of the residents; in the TCU group, 82.5% (n = 203) received a case conference. After adjusting for clustering, no significant difference between DSCUs and non-DSCUs was found. The topic “challenging behaviors” was discussed more often in case conferences in TCUs. ConclusionsCase conferences are a widespread intervention in German nursing homes, including both DSCUs and TCUs. The provision of a case conference is not a special feature of DSCUs.

PC-FACS

PC-FACS

Care and Service at Home for Persons With Dementia in Europe.

To describe available and utilized formal care and service at home for persons with dementia, from diagnosis to end-of-life stage, in eight European countries. A descriptive cross-country design concerning eight European countries as a part of the European research project RightTimePlaceCare. The research team in each country used a mapping system to collect country-specific information concerning dementia care and service system. The mapping system consists of 50 types of care and service activities. Sixteen of the 50 predefined activities concerning care and service at home were selected for this study and subdivided into three categories, following the stages of dementia. Availability was reported to be higher than utilization, and the findings indicated more similarities than differences among the eight countries involved. Even though there were several available activities of "basic care and services" and "healthcare interventions," they were utilized by few in most countries. Furthermore, "specialized dementia care and services" were sparsely available and even more sparsely utilized in the participating countries. The findings indicated that persons with dementia in Europe received formal care and service on a general, basic level but seldom adjusted to their specific needs. This study describes the gap between service provision and utilization enabling nurses to develop individually adjusted care plans for persons with dementia during the progress of the disease. The findings do not include matters of quality of care or how to best organize effective care and services. However, the activities of care and services presented here should shed light on what room there is for improvement when it comes to enabling persons with dementia to go on living at home.

'On one's own strength' Healthcare providers' experience with introducing Marte Meo Counselling in dementia care.

The aim of the present action research study was to investigate the healthcare providers' experiences with introducing Marte Meo Counselling (MMC) in a dementia-specific care unit. Research on the use of MMC shows that healthcare providers saw the patients' resources and needs more clearly and achieved increased awareness of their own skills. An action-oriented research including a three-phase strategy was applied: the mapping phase, the intervention phase and the evaluation phase. During the 5-month mapping phase, two researchers conducted participant observation of a total of 50 hours. The intervention phase consisted of lectures, clinical supervision in MMC and seven reflection groups and lasted 12 months. In the six-month evaluation phase, participant observation of a total of 48 hours was conducted. Four focus group interviews took place during the whole study period of 2 years. The staff went through a process of change described by the following themes: from challenging behaviour to challenging interaction; from generalised skills to contextualised relational care; and from personal challenges to a professional community. As a result of MMC, the healthcare providers realised the value of taking into account the patients' context in dementia care and of being active participants in the patients' world. The focus changed from regarding challenging behaviour as symptoms of a disorder to being a challenge to interaction. Marte Meo Counselling should be combined with continuous reflection to improve healthcare providers' interaction with people who live with dementia. The reflection groups gave the caregivers an opportunity for discussions that would otherwise be impossible in their busy everyday life.

Transitional care for persons with dementia and their caregivers

Introduction: Persons with dementia (PWD) experience many points of contact with health and community services, and must navigate through a health care system that has been criticized for poor integration. Although transitional care (the coordination of care as patients transfer between levels or locations of health care [1]) and health system navigation for PWD have been identified as policy and research priorities, there is a lack of research surrounding transitional care experiences of PWD. The primary objective of this study was to identify important aspects of transitional care from the perspectives of PWD and their caregivers. Secondary research questions addressed whether a) there is a perceived impact of dementia on care transitions in this population and b) important aspects of transitional care identified in existing transitional care models extend to PWD and their caregivers. Methods: The study employed a constructivist grounded theory approach. The semi-structured interview guide included general questions on care transitions, and specific questions informed by existing transitional care models. Interviews were conducted with PWD, caregivers or dyads in two regions of Ontario. Data analysis, which involved familiarization followed by initial and focused coding, was conducted alongside data collection in an iterative manner until theoretical saturation was reached. Member checks were conducted to ensure that the results remained true to participant views. Results and discussion: The domains of transitional care that were important to PWD and their caregivers included: PWD and caregiver proactivity, PWD and caregiver health care system knowledge, provider consistency, individualized care, support for caregiver needs, and social support. Participants valued similar aspects of transitional care as those identified in existing transitional care models, but there was a clear perceived influence of dementia on care transitions due to a heavy reliance on informal caregivers and an apparent lack of understanding of dementia in the health care system. The unique challenges associated with navigating the system with dementia shaped the way that the participants experienced common transitional care elements. Conclusions and lessons learned: Dementia is one of the most significant challenges facing the health care system, and a coordinated and integrated health system response is needed. The results of this study indicate a need for dementia-specific transitional care strategies. 15th International Conference on Integrated Care, Edinburgh, UK, March 25-27, 2015 1 International Journal of Integrated Care – Volume 15, 27 May – URN:NBN:NL:UI:10-1-117085– http://www.ijic.org/ Understanding transitional care from the perspective of PWD and their caregivers may inform better transitional care practice and policy, thus improving their quality of care and quality of life. Limitations: The study was conducted in locations within Ontario, Canada. Since the supports available for PWD moving through the health care system often differ by location, it is possible that the results may not be generalizable outside of the province. Suggestions for future research: We plan to conduct consultations with Alzheimer Society representatives and other stakeholders from across Canada to assess the generalizability of the results and to suggest strategies for improving the transition experiences of persons with dementia and their caregivers. The acceptability and effectiveness of these strategies can be investigated in future research.

Evaluation of a hospital-based day-structuring exercise programme on exacerbated behavioural and psychological symptoms in dementia--the exercise carrousel: study protocol for a randomised controlled trial.

BackgroundConceptual reviews and observational studies describe a link between physical inactivity and behavioural disturbances in people with dementia. Consequently, treatment of these symptoms requires physical activation and pharmacological or physical immobilization should be avoided. The few trials that have been conducted in inpatient dementia care to investigate the effects of exercise on behavioural and psychological symptoms revealed inconsistent results. Due to a lack of evidence, there is a paucity of recommendations for physical activation in this stage of care. Therefore, this trial seeks to investigate the effects of a day-structuring exercise programme on behavioural and psychological symptoms as well as on circadian rhythms of patients with dementia, hospitalized because of their behavioural and psychological disturbances.Methods/DesignA single-centre randomised controlled trial will be conducted in three special dementia care units of an old age psychiatry hospital. Enrolled patients will receive either a 2-week exercise programme, or a 2-week social stimulation programme in addition to usual care. Due to the provision of four day-structuring exercise-sessions in the course of an intervention day, the exercise programme for the study group is called exercise-carrousel. Baseline and post-intervention assessment for the primary outcome variable - the overall effects on behavioural and psychological symptoms - will be measured by the Alzheimer's disease Cooperative Study-Clinical Global Impression of Change. The following objectives are set up as secondary outcomes: dimensions of the behavioural and psychological symptoms of dementia (BPSD) and caregiver burden, routine and on-demand psychotropic medication, patients’ motor behaviour, diurnal cortisol-levels from saliva probes and brain-derived neurotrophic factor-levels from blood serum.DiscussionIn order to be regarded as an important treatment option for behavioural and psychological symptoms, physical activation in inpatient hospital dementia care requires more evidence and appropriate recommendations. Respecting hospital routines and the intra-daily variability of the patients’ motivation and behavioural disturbances in the provision of exercise sessions could lead to higher exercise adherence and better effects on patients’ behavioural and psychological symptoms than former trials have presented. The concealment of allocation throughout the trial and the rating of individual exercise exertion present the key challenges and main limitations of this trial.Trial registrationDRKS00006740 (German Clinical Trial Register, date of registration: 28 October 2014).

“It was like reading a detective novel”: Using PAR to work together for culture change

Participatory action research (PAR), with its focus on engagement and collaboration, is uniquely suited to enhancing culture change initiatives in dementia care. Yet, there is limited literature of its application to culture change approaches in care settings, and even less in dementia specific care contexts. To address these gaps in the literature, the purpose of this paper is to examine the complexities of a PAR project aimed at changing the culture of dementia care in two diverse dementia care settings, including a long term care (LTC) and community care setting. Drawing from data gathered throughout the PAR process, we unpack the challenges experienced by participants working together to guide culture change within their respective care settings. These challenges include: overextending selves through culture change participation; fluctuating group membership; feeling uncertainty, confusion and apprehension about the process; frustratingly slow process; and seeking diverse group representation in decision making. We also highlight the potential for appreciative inquiry (AI) to be integrated with PAR to guide a process whereby participants involved in culture change initiatives can develop strategies to mitigate challenges they experience. We view the challenges and strategies shared here as being constructive to would-be culture change agents and hope this paper will move others to consider the use of PAR when engaging in culture change initiatives.

Discharge Criteria and Follow-Up Support for Dementia Care Units.

Specialized dementia care units (DCUs) house individuals whose behaviors cannot be managed in other settings. To ensure environmental fit, admission/discharge criteria are recommended for DCUs; however, there is no consensus about what criteria should be used. This study aimed to describe, in a random sample of DCUs, the current admission criteria, current/recommended discharge criteria, and services to support discharge. Usable surveys were returned by 23 of 30 facilities. Residents were most frequently admitted because they had a diagnosis of dementia and exhibited cognitive/behavioral problems. The four most common discharge criteria in place/recommended were resident ability to manage in a non-specialized long-term care environment, lack of socially inappropriate behaviors, dependency in activities of daily living, and inability to participate in dementia care activities. These findings suggest that discharge from DCUs is relatively ad hoc. The study lays the groundwork for future research to evaluate the use/appropriateness of these criteria.

Knowledge, Attitudes, and Clinical Practices for Patients With Dementia Among Mental Health Providers in China: City and Town Differences

Mental health providers are the major resource families rely on when experiencing the effects of dementia. However, mental health resources and manpower are inadequate and unevenly distributed between cities and towns in China. This study was conducted to examine similarities and differences in knowledge, attitudes, and clinical practices concerning dementia and working with family caregivers from mental health providers’ perspectives in city versus town settings. Data were collected during focus group discussions with 40 mental health providers in the Xicheng (city) and Daxing (town) districts in Beijing, China in 2011. Regional disparities between providers’ knowledge of early diagnosis of dementia and related counseling skills were identified. Regional similarities included training needs, dementia-related stigma, and low awareness of dementia among family caregivers. Culturally sensitive education specific to dementia for mental health providers and a specialized dementia care model for people with dementia and their family caregivers are urgently needed. Implications for geriatric practitioners and educators are discussed.

Comparing estimated cost per patient for dementia care: Two municipalities and Swedish national population data

Aim: To evaluate a collaborative dementia program for its influence on cost and in which dementia care specialists and primary care centres collaborate with the municipality and, thereby, effect direct cost of dementia care. Methods: The cost of illness (COI) study investigated the cost of dementia care to the municipality, specifically on the Municipality of Kalmar. Municipal costs in the Municipality of Alvsjo and national cost figures for Sweden were used as comparisons. The major costs related to dementia care, such as the cost of home care, day-care centers, and nursing home placement were extracted from municipality records. Results: The yearly municipal cost per person with dementia in Kalmar ranged from 14,206 C to 26,334 C (17,684 USD to 32,780 USD) as compared to Alvsjo 10,610 C to 30,464 C (13,207 USD to 37,921 USD), and Swedish national figures showing costs from 23,600 C to 36,459 C (29,378 USD to 45,384 USD), per patient, annual cost. In Kalmar, 60% of the patients with dementia received help from the municipality as compared to 69% in Alvsjo. Conclusions: Implementation of such a dementia program is a recommendation that would not increase the cost for dementia care in the Municipality of Kalmar.