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Total cost of care increases significantly from early to mild Alzheimer’s disease: 5-year ALSOVA follow-up
- Authors:
- JETSONEN Viivi, et al
- Journal article citation:
- Age and Ageing, 50(6), 2021, pp.2116-2122.
- Publisher:
- Oxford University Press
Introduction: We studied the costs of formal and informal care in relation to Alzheimer’s disease (AD) progression. Methods: 231 persons with AD with a family caregiver were followed up for 5 years. The Clinical Dementia Rating Scale—Sum of Boxes (CDR-SB) was used to measure AD progression. Health and social care unit costs were used for formal care costs. An opportunity cost method for lost leisure time was applied to analyse the cost of informal care. Results: Total cost of care in early stage AD (CDR-SB ≤ 4) was 16,448€ (95% CI 13,722–19,716) annually. In mild (CDR-SB 4.5–9), moderate (CDR-SB 9.5–15.5) and severe (CDR-SB ≥ 16) AD, the total costs were 2.3, 3.4 and 4.4 times higher, respectively. A one-unit increase in CDR-SB increased the total, formal and informal costs by 15, 11 and 18%, respectively. Conclusions: Compared to early AD, the costs of total, formal and informal care are remarkably higher already in mild AD. This finding emphasises early diagnosis, interventions and family support for persons with AD and their caregivers. (Edited publisher abstract)
Continuing to participate in the dance of life as oneself: the lived experience of meaning in life for older adults with alzheimer’s disease
- Authors:
- DEWITTE Laura, et al
- Journal article citation:
- Gerontologist, 61(7), 2021, pp.1019-1029.
- Publisher:
- Oxford University Press
Background and Objectives: Meaning in life is an important aspect of positive psychological functioning for older adults. Limited work suggests the relevance of the experience of meaning for people with dementia, but research into this experience from their personal perspective is lacking. The current study provides an in-depth investigation of the lived experience of meaning in life for older adults with Alzheimer’s disease. Research Design and Methods: The study was conducted following the phenomenological reflective lifeworld approach. In-depth interviews were conducted with 16 older adults (+65) with Alzheimer’s disease living either at home or in a nursing home in Belgium. Data analysis was an iterative process aimed at illuminating the constituents and essence of the phenomenon. Results: The essence of the experience of meaning in life for participants was understood as “continuing to participate in the dance of life as oneself.” This experience was further clarified in four closely intertwined constituents: (a) feeling connected and involved, (b) continuing everyday life as oneself, (c) calmly surrendering and letting go, and (d) desiring freedom, growth, and invigoration. Discussion and Implications: Our findings contribute to a deeper understanding of meaning in life as experienced by older adults with Alzheimer’s disease themselves. They emphasize the relevance of the concept for psychological dementia research and offer original insight for the inclusion of meaning in life as an important aspect of holistic dementia care. (Edited publisher abstract)
Assessing an evidence-based intervention for spouse caregivers of persons with Alzheimer’s disease: results of a community implementation of the NYUCI in Israel
- Authors:
- WERNER Perla, et al
- Journal article citation:
- Aging and Mental Health, 25(9), 2021, pp.1676-1683.
- Publisher:
- Taylor and Francis
Objectives: Alzheimer’s disease (AD) affects not only the person with the illness, but family caregivers as well. The NYU Caregiver Intervention (NYUCI), a psychosocial intervention which has demonstrated both short and long-term benefits for caregivers, has been used widely in the United States and in Australia and England. The Israeli study was a hybrid between a community implementation study and a randomized controlled trial (RCT) of the NYUCI in a non-English speaking country. Method: A sample of 100 spouse caregivers participated in trial comparing the NYUCI provided by ten Israeli clinicians (enhanced care), to support group participation (usual care). The major outcome of interest was caregiver depressive symptoms, measured with the Geriatric Depression Scale. A linear random effects regression model controlling for factors associated with depressive symptoms was used to plot the longitudinal trajectories of depressive symptoms over the two-year study period and compare outcomes for the enhanced care and control groups. Results: One hundred spouse caregivers enrolled, of whom 81 provided data at baseline and at one or more post intervention assessments. The Israeli adaptation of the NYUCI was effective in reducing depressive symptoms reported by caregivers compared to their counterparts in the control group, b= −1.29 [95%CI (−2.43, −0.15)], p= .0265. Conclusion: While implementing a randomized controlled trial of an intervention developed and tested in traditional research settings using community providers in Israel, posed unique challenges, the study demonstrated benefits to caregivers. As a result, 30 municipalities in Israel are currently implementing an ongoing adaptation of the NYUCI. (Edited publisher abstract)
Development and psychometric evaluation of the Social Connectedness Index in nursing home residents with Alzheimer's disease and dementia using the Minimum Data Set 3.0
- Authors:
- BOVA Carol A., et al
- Journal article citation:
- International Journal of Geriatric Psychiatry, 36(7), 2021, pp.1110-1119.
- Publisher:
- Wiley
Objectives: To develop a reliable and valid measure of social connectedness among nursing home residents with Alzheimer's disease and related dementias (ADRD) using items available in the Minimum Dataset 3.0 (MDS). Methods: We conducted a retrospective scale development study using the 2016 MDS with two populations of nursing home residents with ADRD: (1) new admissions (not post-acute care) (n = 146,694); (2) residents with comprehensive annual assessments (n = 294,704). Twenty-nine items were included for consideration. Psychometric evaluation included content validity, item analysis, internal consistency reliability, criterion-related validity, and exploratory factor analysis. Analyses were stratified by self- or staff-assessed pain. Results: The resulting five item Social Connectedness Index (SCI) has good content (Fleiss Kappa = 0.67), criterion-related and construct validity and adequate internal consistency reliability (Kuder Richardson-20: 0.63–0.74) in persons with ADRD. As anticipated, younger residents, men, and those with severe cognitive impairment, anxiety, and depression were more likely to be categorized in the low social connectedness group. Conclusion: The SCI is a promising measure for estimating the amount of social connectedness present for nursing home residents with ADRD. Further work needs to be done to evaluate the usefulness of the SCI for evaluating health and well-being among this population over time. (Edited publisher abstract)
Enhancing sleep quality for nursing home residents with dementia: a pragmatic randomized controlled trial of an evidence-based frontline huddling program
- Authors:
- SNOW A. Lynn, et al
- Journal article citation:
- BMC Geriatrics, 21(281), 2021, Online only
- Publisher:
- BioMed Central Ltd
Background: Disturbed sleep places older adults at higher risk for frailty, morbidity, and even mortality. Yet, nursing home routines frequently disturb residents’ sleep through use of noise, light, or efforts to reduce incontinence. Nursing home residents with Alzheimer’s disease and or related dementias - almost two-thirds of long-stay nursing home residents- are likely to be particularly affected by sleep disturbance. Addressing these issues, this study protocol implements an evidence-based intervention to improve sleep: a nursing home frontline staff huddling program known as LOCK. The LOCK program is derived from evidence supporting strengths-based learning, systematic observation, relationship-based teamwork, and efficiency. Methods: This study protocol outlines a NIH Stage III, real-world hybrid efficacy-effectiveness pragmatic trial of the LOCK sleep intervention. Over two phases, in a total of 27 non-VA nursing homes from 3 corporations, the study will (1) refine the LOCK program to focus on sleep for residents with dementia, (2) test the impact of the LOCK sleep intervention for nursing home residents with dementia, and (3) evaluate the intervention’s sustainability. Phase 1 (1 year; n = 3 nursing homes; 1 per corporation) will refine the intervention and train-the-trainer protocol and pilot-tests all study methods. Phase 2 (4 years; n = 24 nursing homes; 8 per corporation) will use the refined intervention to conduct a wedge-design randomized, controlled, clinical trial. Phase 2 results will measure the LOCK sleep intervention’s impact on sleep (primary outcome) and on psychotropic medication use, pain and analgesic medication use, and activities of daily living decline (secondary outcomes). Findings will point to inter-facility variation in the program’s implementation and sustainability. Discussion: This is the first study to our knowledge that applies a dementia sleep intervention to systematically address known barriers to nursing home quality improvement efforts. This innovative study has future potential to address clinical issues beyond sleep (safety, infection control) and expand to other settings (assisted living, inpatient mental health). The study’s strong team, careful consideration of design challenges, and resulting rigorous, pragmatic approach will ensure success of this promising intervention for nursing home residents with dementia. (Edited publisher abstract)
Effectiveness of online dementia caregivers training programs: a systematic review
- Authors:
- PLEASANT Michelle, et al
- Journal article citation:
- Geriatric Nursing, 41(6), 2020, pp.921-935.
- Publisher:
- Elsevier
Over the next thirty years, Alzheimer's disease rates will increase alongside global aging. With the anticipated increase in demand, knowledgeable and skilled dementia caregivers will be in need across the long-term care spectrum. This study is a systematic review of online dementia-based training programs for formal and informal caregivers conducted to analyze evidence for using online training programs. We used the Preferred Reporting Items for Systematic Reviews (PRISMA) method. Methodological quality was assessed by the Cochrane Collaboration Back Review Group criteria. No previously published systematic review has analyzed online dementia training programs among both formal and informal caregivers. A systematic search of Web of Science, PsychInfo, and PubMed resulted in a final sample of (N = 19) studies. Results suggest that online interventions improve the condition and preparedness of caregivers, but future evaluations should consider study designs with multiple time points, control groups, and content that is personalized and interactive. (Edited publisher abstract)
A preliminary evaluation of a client-centred prompting tool for supporting everyday activities in individuals with mild to moderate levels of cognitive impairment due to dementia
- Authors:
- HARRIS Nigel, et al
- Journal article citation:
- Dementia: the International Journal of Social Research and Practice, 20(3), 2021, pp.867-883.
- Publisher:
- Sage
Objectives: Technology-based prompting has the potential to support people with dementia to complete multistep tasks in the home. However, these devices can be complex to use. This paper reports a feasibility trial of a personalised touchscreen digital prompter designed for home use. Methodology: A tablet-based prompter suitable for people living with dementia was developed, along with a detailed guidance manual. Carers loaded instructions for completing the task onto the prompter, and the person with dementia then used the tablet independently to complete a task. Eleven couples used the prompter ‘out-of-the-box’ with no support other than a guidance manual. Results: The majority of participants with dementia could follow the steps on the prompter, and carers were able to breakdown and load tasks onto the prompter. Eight couples used the prompter successfully to complete goals that they had identified in advance. These included preparing simple snacks and using a TV remote control. Successfully achieving goals was associated with more frequent use of the prompting screen on more days, but not higher levels of editing or previewing of tasks. Conclusion: The study provides the preliminary evidence that family caregivers can use a touchscreen tablet, software and manual package to identify specific tasks and break these down into steps and that people living with dementia can then follow the prompts to complete the tasks. This potentially represents an important advance in dementia care. Further testing is required to establish efficacy and to identify any factors that impact on outcomes. (Edited publisher abstract)
Evaluation of AID-COM, a communication-focused program for family carers of people with early-stage Alzheimer’s disease: a pilot study (innovative practice)
- Authors:
- CHESNEAU Sophie, et al
- Journal article citation:
- Dementia: the International Journal of Social Research and Practice, 20(2), 2021, pp.779-790.
- Publisher:
- Sage
Families providing care to relatives with Alzheimer’s disease are quickly destabilized by changes that disrupt communication. This pilot mixed-design study aimed to provide a quantitative and qualitative evaluation of a communication-based training program for carers of people with early-stage Alzheimer’s disease. Five participants received three training sessions. The use of communication strategies by participants and their effectiveness were evaluated before and after the training, and a focus group was conducted to gather participants’ impressions about the impacts of the training on communication with the person they cared for. The AID-COM (AID for COMmunication) program appears to have met expectations. (Edited publisher abstract)
End-of-life care among nursing home residents with dementia varies by nursing home and market characteristics
- Authors:
- ORTH Jessica, et al
- Journal article citation:
- Journal of the American Medical Directors Association, 22(2), 2021, pp.320-328.
- Publisher:
- Elsevier (for the American Medical Directors Association)
Objectives: Nursing homes (NHs) are critical end-of-life (EOL) care settings for 70% of Americans dying with Alzheimer's disease/related dementias (ADRD). Whether EOL care/outcomes vary by NH/market characteristics for this population is unknown but essential information for improving NH EOL care/outcomes. Our objectives were to examine variations in EOL care/outcomes among decedents with ADRD and identify associations with NH/market characteristics. Design: Cross-sectional. Outcomes: Place-of-death (hospital/NH), presence of pressure ulcers, potentially avoidable hospitalizations (PAHs), and hospice use at EOL. Key covariates were ownership, staffing, presence of Alzheimer's units, and market competition. Setting and Participants: Long-stay NH residents with ADRD, age 65 + years of age, who died in 2017 (N = 191,435; 14,618 NHs) in NHs or hospitals shortly after NH discharge. Methods: National Medicare claims, Minimum Data Set, public datasets. Descriptive analyses and multivariable logistic regressions. Results: As ADRD severity increased, adjusted rates of in-hospital deaths and PAHs decreased (17.0% to 6.3%; 11.2% to 7.0%); adjusted rates of dying with pressure ulcers and hospice use increased (8.2% to 13.5%; 24.5% to 40.7%). Decedents with moderate and severe ADRD had 16% and 13% higher likelihoods of in-hospital deaths in for-profit NHs. In NHs with Alzheimer's units, likelihoods of in-hospital deaths, dying with pressure ulcers, and PAHs were significantly lower. As ADRD severity increased, higher licensed nurse staffing was associated with 14%‒27% lower likelihoods of PAHs. Increased NH market competition was associated with higher likelihood of hospice use, and lower likelihood of in-hospital deaths among decedents with moderate ADRD. Conclusions and Implications: Decedents with ADRD in NHs that were nonprofit, had Alzheimer's units, higher licensed nurse staffing, and in more competitive markets, had better EOL care/outcomes. Modifications to state Medicaid NH payments may promote better EOL care/outcomes for this population. Future research to understand NH care practices associated with presence of Alzheimer's units is warranted to identify mechanisms possibly promoting higher-quality EOL care. (Edited publisher abstract)
Factors affecting the implementation, use, and adoption of real-time location system technology for persons living with cognitive disabilities in long-term care homes: systematic review
- Authors:
- GRIGOROVICH Alisa, et al
- Journal article citation:
- Journal of Medical Internet Research, 23(1), 2021, p.e22831. Online only
- Publisher:
- JMIR Publications
Background: As the aging population continues to grow, the number of adults living with dementia or other cognitive disabilities in residential long-term care homes is expected to increase. Technologies such as real-time locating systems (RTLS) are being investigated for their potential to improve the health and safety of residents and the quality of care and efficiency of long-term care facilities. Objective: The aim of this study is to identify factors that affect the implementation, adoption, and use of RTLS for use with persons living with dementia or other cognitive disabilities in long-term care homes. Methods: We conducted a systematic review of the peer-reviewed English language literature indexed in MEDLINE, Embase, PsycINFO, and CINAHL from inception up to and including May 5, 2020. Search strategies included keywords and subject headings related to cognitive disability, residential long-term care settings, and RTLS. Study characteristics, methodologies, and data were extracted and analyzed using constant comparative techniques. Results: A total of 12 publications were included in the review. Most studies were conducted in the Netherlands (7/12, 58%) and used a descriptive qualitative study design. We identified 3 themes from our analysis of the studies: barriers to implementation, enablers of implementation, and agency and context. Barriers to implementation included lack of motivation for engagement; technology ecosystem and infrastructure challenges; and myths, stories, and shared understanding. Enablers of implementation included understanding local workflows, policies, and technologies; usability and user-centered design; communication with providers; and establishing policies, frameworks, governance, and evaluation. Agency and context were examined from the perspective of residents, family members, care providers, and the long-term care organizations. Conclusions: There is a striking lack of evidence to justify the use of RTLS to improve the lives of residents and care providers in long-term care settings. More research related to RTLS use with cognitively impaired residents is required; this research should include longitudinal evaluation of end-to-end implementations that are developed using scientific theory and rigorous analysis of the functionality, efficiency, and effectiveness of these systems. Future research is required on the ethics of monitoring residents using RTLS and its impact on the privacy of residents and health care workers. (Edited publisher abstract)