scholarly journals The Use and Costs of Paid and Unpaid Care for People with Dementia: Longitudinal Findings from the IDEAL Cohort

2021 ◽  
pp. 1-18
Author(s):  
Catherine Henderson ◽  
Martin Knapp ◽  
Anthony Martyr ◽  
Laura D. Gamble ◽  
Sharon M. Nelis ◽  
...  
Keyword(s):  
Social Services ◽  
Lewy Body ◽  
Community Dwelling ◽  
Rate Of Change ◽  
Unpaid Care ◽  
Costs Of Care ◽  
People With Dementia ◽  
Diagnostic Characteristics ◽  
Growth Curve Modelling ◽  
The Ideal

Background: The drivers of costs of care for people with dementia are not well understood and little is known on the costs of care for those with rarer dementias. Objective: To characterize use and costs of paid and unpaid care over time in a cohort of people with dementia living in Britain. To explore the relationship between cohort members’ demographic and clinical characteristics and service costs. Methods: We calculated costs of health and social services, unpaid care, and out-of-pocket expenditure for people with mild-to-moderate dementia participating in three waves of the IDEAL cohort (2014– 2018). Latent growth curve modelling investigated associations between participants’ baseline sociodemographic and diagnostic characteristics and mean weekly service costs. Results: Data were available on use of paid and unpaid care by 1,537 community-dwelling participants with dementia at Wave 1, 1,199 at Wave 2, and 910 at Wave 3. In models of paid service costs, being female was associated with lower baseline costs and living alone was associated with higher baseline costs. Dementia subtype and caregiver status were associated with variations in baseline costs and the rate of change in costs, which was additionally influenced by age. Conclusion: Lewy body and Parkinson’s disease dementias were associated with higher service costs at the outset, and Lewy body and frontotemporal dementias with more steeply increasing costs overall, than Alzheimer’s disease. Planners of dementia services should consider the needs of people with these relatively rare dementia subtypes as they may require more resources than people with more prevalent subtypes.

scholarly journals Impact of COVID-19 on ‘living well’ with mild-to-moderate dementia in the community: findings from the IDEAL cohort

2021 ◽  
Author(s):  
Linda Clare ◽  
Anthony Martyr ◽  
Laura D. Gamble ◽  
Claire Louise Pentecost ◽  
Rachel Collins ◽  
...  
Keyword(s):  
Sense Of Self ◽  
Social Contact ◽  
Community Dwelling ◽  
Everyday Activities ◽  
Living Well ◽  
People With Dementia ◽  
Moderate Dementia ◽  
Negative Impacts ◽  
The Impact ◽  
The Ideal

BackgroundNegative impacts of the COVID-19 pandemic on people with dementia have been widely-documented, but most studies have relied on carer reports and few have compared responses to information collected before the pandemic.ObjectiveWe aimed to explore the impact of the pandemic on community-dwelling individuals with mild-to-moderate dementia and compare responses with pre-pandemic data.MethodsDuring the second wave of the pandemic we conducted structured telephone interviews with 173 people with dementia and 242 carers acting as informants, all of whom had previously participated in the IDEAL cohort. Where possible we benchmarked responses against pre-pandemic data.ResultsSignificant perceived negative impacts were identified in cognitive and functional skills and ability to engage in self-care and manage everyday activities, along with increased levels of loneliness and discontinuity in sense of self and a decline in perceived capability to ‘live well’. Compared to pre-pandemic data there were lower levels of pain, depression and anxiety, higher levels of optimism, and better satisfaction with family support. There was little impact on physical health, mood, social connections and relationships, or perceptions of neighbourhood characteristics.ConclusionEfforts to mitigate negative impacts of pandemic-related restrictions and restore quality of life could focus on reablement to address the effects on participation in everyday activities, creating opportunities for social contact to reduce loneliness, and personalised planning to reconnect people with their pre-COVID selves. Such efforts may build on the resilience demonstrated by people with dementia and carers in coping with the pandemic.

scholarly journals Impact of COVID-19 on ‘living well’ with mild-to-moderate dementia in the community: findings from the IDEAL cohort

2021 ◽  
Author(s):  
Linda Clare ◽  
Anthony Martyr ◽  
Laura D Gamble ◽  
Claire Pentecost ◽  
Rachel Collins ◽  
...  
Keyword(s):  
Sense Of Self ◽  
Social Contact ◽  
Community Dwelling ◽  
Everyday Activities ◽  
Living Well ◽  
People With Dementia ◽  
Moderate Dementia ◽  
Negative Impacts ◽  
The Impact ◽  
The Ideal

Abstract Background Negative impacts of the COVID-19 pandemic on people with dementia have been widely-documented, but most studies have relied on carer reports and few have compared responses to information collected before the pandemic. Objective We aimed to explore the impact of the pandemic on community-dwelling individuals with mild-to-moderate dementia and compare responses with pre-pandemic data. Methods During the second wave of the pandemic we conducted structured telephone interviews with 173 people with dementia and 242 carers acting as informants, all of whom had previously participated in the IDEAL cohort. Where possible we benchmarked responses against pre-pandemic data. Results Significant perceived negative impacts were identified in cognitive and functional skills and ability to engage in self-care and manage everyday activities, along with increased levels of loneliness and discontinuity in sense of self and a decline in perceived capability to ‘live well’. Compared to pre-pandemic data there were lower levels of pain, depression and anxiety, higher levels of optimism, and better satisfaction with family support. There was little impact on physical health, mood, social connections and relationships, or perceptions of neighbourhood characteristics. Conclusion Efforts to mitigate negative impacts of pandemic-related restrictions and restore quality of life could focus on reablement to address the effects on participation in everyday activities, creating opportunities for social contact to reduce loneliness, and personalised planning to reconnect people with their pre-COVID selves. Such efforts may build on the resilience demonstrated by people with dementia and carers in coping with the pandemic.

scholarly journals Impact of COVID-19 on ‘Living Well’ with Mild-to-Moderate Dementia in the Community: Findings from the IDEAL Cohort

2021 ◽  
pp. 1-16
Author(s):  
Linda Clare ◽  
Anthony Martyr ◽  
Laura D. Gamble ◽  
Claire Pentecost ◽  
Rachel Collins ◽  
...  
Keyword(s):  
Sense Of Self ◽  
Social Contact ◽  
Community Dwelling ◽  
Everyday Activities ◽  
Living Well ◽  
People With Dementia ◽  
Moderate Dementia ◽  
Negative Impacts ◽  
The Impact ◽  
The Ideal

Background: Negative impacts of the COVID-19 pandemic on people with dementia have been widely-documented, but most studies have relied on carer reports and few have compared responses to information collected before the pandemic. Objective: We aimed to explore the impact of the pandemic on community-dwelling individuals with mild-to-moderate dementia and compare responses with pre-pandemic data. Methods: During the second wave of the pandemic, we conducted structured telephone interviews with 173 people with dementia and 242 carers acting as informants, all of whom had previously participated in the IDEAL cohort. Where possible, we benchmarked responses against pre-pandemic data. Results: Significant perceived negative impacts were identified in cognitive and functional skills and ability to engage in self-care and manage everyday activities, along with increased levels of loneliness and discontinuity in sense of self and a decline in perceived capability to ‘live well’. Compared to pre-pandemic data, there were lower levels of pain, depression, and anxiety, higher levels of optimism, and better satisfaction with family support. There was little impact on physical health, mood, social connections and relationships, or perceptions of neighborhood characteristics. Conclusion: Efforts to mitigate negative impacts of pandemic-related restrictions and restore quality of life could focus on reablement to address the effects on participation in everyday activities, creating opportunities for social contact to reduce loneliness, and personalized planning to reconnect people with their pre-COVID selves. Such efforts may build on the resilience demonstrated by people with dementia and carers in coping with the pandemic.

scholarly journals Perceived and objective availability of green and blue spaces and quality of life in people with dementia: results from the IDEAL programme

2021 ◽  
Author(s):  
Yu-Tzu Wu ◽  
◽  
Linda Clare ◽  
Ian Rees Jones ◽  
Sharon M. Nelis ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Urban Areas ◽  
Positive Association ◽  
Deprivation Level ◽  
Community Dwelling ◽  
Future Research ◽  
Interaction Terms ◽  
Perceived Availability ◽  
People With Dementia

Abstract Purpose The aim of this study was to investigate the associations between quality of life and both perceived and objective availability of local green and blue spaces in people with dementia, including potential variation across rural/urban settings and those with/without opportunities to go outdoors. Methods This study was based on 1540 community-dwelling people with dementia in the Improving the experience of Dementia and Enhancing Active Life (IDEAL) programme. Quality of life was measured by the Quality of Life in Alzheimer’s Disease (QoL-AD) scale. A list of 12 types of green and blue spaces was used to measure perceived availability while objective availability was estimated using geographic information system data. Regression modelling was employed to investigate the associations of quality of life with perceived and objective availability of green and blue spaces, adjusting for individual factors and deprivation level. Interaction terms with rural/urban areas or opportunities to go outdoors were fitted to test whether the associations differed across these subgroups. Results Higher QoL-AD scores were associated with higher perceived availability of local green and blue spaces (0.82; 95% CI 0.06, 1.58) but not objective availability. The positive association between perceived availability and quality of life was stronger for urban (1.50; 95% CI 0.52, 2.48) than rural residents but did not differ between participants with and without opportunities to go outdoors. Conclusions Only perceived availability was related to quality of life in people with dementia. Future research may investigate how people with dementia utilise green and blue spaces and improve dementia-friendliness of these spaces.

scholarly journals Evaluation of FindMyApps: protocol for a randomized controlled trial of the effectiveness and cost-effectiveness of a tablet-based intervention to improve self-management and social participation of community-dwelling people with mild dementia, compared to usual tablet use

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
David Peter Neal ◽  
Yvonne J. F. Kerkhof ◽  
Teake P. Ettema ◽  
Majon Muller ◽  
Judith Bosmans ◽  
...  
Keyword(s):  
Randomized Controlled Trial ◽  
Cost Effectiveness ◽  
Usual Care ◽  
Social Participation ◽  
Controlled Trial ◽  
Community Dwelling ◽  
Self Management ◽  
Tablet Computer ◽  
Randomized Controlled ◽  
People With Dementia

Abstract Background For the rising number of people living with dementia, cost-effective community-based interventions to support psychosocial care are needed. The FindMyApps intervention has been developed with and for people with dementia and their caregivers, to help them use tablets to facilitate self-management and engagement in meaningful social activities. A feasibility study and exploratory pilot trial evaluating FindMyApps have been carried out. This definitive trial further evaluates the effectiveness of the intervention and, for the first time, the cost-effectiveness. Methods A randomized controlled non-blinded single-center two-arm superiority trial will be conducted. Community-dwelling people with Mild Cognitive Impairment (MCI), or dementia with a Mini Mental-State Examination (MMSE) of > 17 and < 26, or Global Deterioration Scale 3 or 4, with an informal caregiver and access to a wireless internet connection will be included. In total, 150 patient-caregiver dyads will be randomly allocated to receive either usual care (control arm – tablet computer; n = 75 dyads) or usual care and the FindMyApps intervention (experimental arm – tablet computer and FindMyApps; n = 75 dyads). The primary outcomes are: for people with dementia, self-management and social participation; for caregivers, sense of competence. In addition to a main effect analysis, a cost-effectiveness analysis will be performed. In line with MRC guidance for evaluation of complex interventions a process evaluation will also be undertaken. Discussion Results of the trial are expected to be available in 2023 and will be submitted for publication in international peer-reviewed scientific journals, in addition to conference presentations and reporting via the EU Marie Sklodowska-Curie DISTINCT ITN network. By providing evidence for or against the effectiveness and cost-effectiveness of the FindMyApps intervention, the results of the trial will influence national implementation of FindMyApps. We hope that the results of the trial will further stimulate research and development at the intersection of technology and psycho-social care in dementia. We hope to further demonstrate that the randomized controlled trial is a valuable and feasible means of evaluating new digital technologies, to stimulate further high-quality research in this growing field. Trial registration number Netherlands Trial Register: NL8157; registered 15th November 2019.

Physical Activity and its Influencing Factors in Community-Dwelling Older Adults With Dementia: A Path Analysis

2021 ◽  
pp. 105477382110339
Author(s):  
Bei Li ◽  
Xiuxiu Huang ◽  
Chenchen Meng ◽  
Qiaoqin Wan ◽  
Yongan Sun
Keyword(s):  
Physical Activity ◽  
Older Adults ◽  
Path Analysis ◽  
Neuropsychiatric Symptoms ◽  
Community Dwelling ◽  
Cross Sectional ◽  
People With Dementia ◽  
The Status ◽  
Path Analysis Approach ◽  
Community Dwelling Older Adults

Dementia is prevalent in worldwide, and increases the care burden and potential costs. Physical activity (PA) has been increasingly shown to be beneficial for them. This was a cross-sectional observational study aiming to investigate the status of PA among community-dwelling older adults with dementia in Beijing or Hangzhou, China, and verify the relationships between neuropsychiatric symptoms, activities of daily living (ADL), caregivers’ fear of patients’ falling and their PA using a path analysis approach. The level of PA among 216 included people with dementia was low. PA was related to the neuropsychiatric symptoms, with ADL and caregivers’ fear of patients’ falling have mediation roles. The findings indicated that person-centered strategies related to the management of these symptoms might be helpful to improve ADL, relieve caregivers’ concerns about them falling and consequently foster positive participation in PA.

scholarly journals Caregiver Status and Diet Quality in Community-Dwelling Adults

Nutrients ◽  
2021 ◽  
Vol 13 (6) ◽  
pp. 1803
Author(s):  
Sharmin Hossain ◽  
May A. Beydoun ◽  
Michele K. Evans ◽  
Alan B. Zonderman ◽  
Marie F. Kuczmarski
Keyword(s):  
Diet Quality ◽  
Healthy Aging ◽  
Healthy Eating Index ◽  
Community Dwelling ◽  
Rate Of Change ◽  
Least Square ◽  
Inverse Association ◽  
Linear Regression Models ◽  
Middle Aged ◽  
Cross Sectional

Objective: We investigated cross-sectional and longitudinal associations of diet quality with middle-aged caregiver status. Methods: Caregiving in the Healthy Aging in Neighborhoods of Diversity across the Life Span (HANDLS) study (57.7% women, 62% African American (AA)) was measured at waves 3 (2009–2013) and 4 (2013–2017) (mean follow-up time 4.1 years). Diet quality was assessed by the Healthy Eating Index 2010 (HEI-2010) derived from two separate 24 h diet recalls. Multivariable ordinary least square regression was performed for cross-sectional analyses of the association of wave 4 caregiving with wave 4 HEI-2010. Wave 3 caregiving was examined both cross-sectionally and with annual rate of change in HEI using mixed-effects linear regression Models. Multivariable models were adjusted for age, sex, and poverty status. Results: Cross-sectional analyses at wave 4 demonstrate an inverse association of frequent caregiving (“Daily or Weekly” vs. “Never”) for grandchildren with HEI-2010 total score (i.e., lower diet quality) among Whites (β = −2.83 ± 1.19, p = 0.03, Model 2) and AAs (β = −1.84 ± 0.79, p = 0.02,). The “cross-sectional” analysis pertaining to grandchildren caregiving frequency suggested that frequent caregiving (i.e., “Daily or Weekly” vs. “Never” (β = −2.90 ± 1.17, p = 0.04)) only among Whites was inversely related to HEI-2010 total score. Total HEI-2010 score was also related to caring (Model 1), for the elderly over “5 years vs. Never” among Whites (−7.31 ± 3.54, p = 0.04, Model 2). Longitudinally, we found slight potential improvement in diet quality over time (“Daily or Weekly” vs. Never by TIME interaction: +0.88 ± 0.38, p = 0.02) with frequent caregiving among Whites, but not so among AAs. Conclusions: Frequent caring for grandchildren had an inverse relationship with the diet quality of White and AA urban middle-aged caregivers, while caring for elderly was inversely linked to diet quality among Whites only. Longitudinal studies should address the paucity of research on caregivers’ nutritional quality.

scholarly journals Exploring the ‘active mechanisms’ for engaging rural-dwelling older men with dementia in a community technological initiative

2019 ◽  
Vol 40 (9) ◽  
pp. 1906-1938 ◽  
Author(s):  
Ben Hicks ◽  
Anthea Innes ◽  
Samuel R. Nyman
Keyword(s):  
Computer Game ◽  
Older Men ◽  
Community Dwelling ◽  
Microsoft Kinect ◽  
Participatory Action ◽  
Nintendo Wii ◽  
Traditional Health ◽  
People With Dementia ◽  
Health And Social Care ◽  
Field Notes

AbstractResearch has suggested ecopsychosocial initiatives can promote a sense of wellbeing and inclusion in people with dementia. However, few studies have elucidated the ‘active mechanisms’ whereby such initiatives can achieve these outcomes, so hindering their generalisability. This is particularly pertinent when seeking to support community-dwelling older men with dementia who are reluctant to engage with traditional health and social care initiatives. This paper reports on a study that drew from the principles of Participatory Action Research to explore the ‘active mechanisms’ of a technological initiative for older men (65+ years) with dementia in rural England. An individually tailored, male-only initiative, using off-the-shelf computer game technology (e.g. iPad, Nintendo Wii and Microsoft Kinect) was delivered over a nine-week period. Multiple qualitative methods were employed, including: focus groups, open interviews and extensive reflective field notes, to gather data from the perspective of 22 men, 15 care partners and five community volunteers. The data were analysed thematically and interpreted using a masculinity lens. Three mechanisms contributed to the initiative's success: the use of the technology, the male-only environment and the empowering approach adopted. The paper argues that initiatives aimed at community-dwelling older men with dementia would be advised to consider these gendered experiences and ensure participants can maximise their masculine capital when participating in them, by providing enabling activities, non-threatening environments and empowering approaches of delivery.

scholarly journals Profiles of Family and Friend Caregivers of Community-Dwelling People With Dementia: A Latent Class Analysis

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 59-59
Author(s):  
Eric Jutkowitz ◽  
Lauren Mitchell ◽  
Joseph Gaugler
Keyword(s):  
Latent Class Analysis ◽  
Latent Class ◽  
Disease Onset ◽  
Community Dwelling ◽  
Health And Retirement Study ◽  
Class Analysis ◽  
People With Dementia ◽  
The Hours ◽  
Retirement Study ◽  
Post Onset

Abstract People living with Alzheimer’s disease and related dementias (ADRD) receive most of their care from family/friends, but little is known about the organization of this care. We used data from the Health and Retirement Study and latent class analysis to determine variation in the hours of care received by community-dwelling people with ADRD from disease onset up to 6-years post onset. At incidence (n=1,158), the latent class analysis identified two groups of caregiving patterns. In the first group, 10% (n=109) of people with ADRD received 481 hours (SD=177) of care. Most care was provided by a spouse (411 hours) with less from children (28 hours), other family/friends (17 hours), and paid individuals (25 hours). In the second latent class, the remaining 90% (n=1,049) of people with ADRD received 114 hours (SD=202) of care which was distributed between spouses (12 hours), children (51 hours), other relatives/friends (22 hours), and paid individuals (29 hours). By 6-years post incidence, 7% (n=76) of the original ADRD cohort remained in the community, and we identified two latent classes independent of those identified at incidence. Almost 15% (n=11) of people with ADRD received a majority of care from a spouse (376 hours) with care supplemented by children (10 hours) and paid individuals (54 hours). The remaining 85% (n=65) of people with ADRD received 294 (SD=314) hours of care from spouses (13 hours), children (104 hours), other family/friends (83 hours), and paid individuals (67 hours). Policies/interventions supporting caregivers must account for the heterogeneity in the organization caregivers.

scholarly journals What Are the Benefits of Pet Ownership and Care Among People With Mild-to-Moderate Dementia? Findings From the IDEAL programme

2020 ◽  
pp. 073346482096261
Author(s):  
Carol Opdebeeck ◽  
Michael A. Katsaris ◽  
Anthony Martyr ◽  
Ruth A. Lamont ◽  
James A. Pickett ◽  
...  
Keyword(s):  
Positive Outcomes ◽  
Pet Ownership ◽  
Active Life ◽  
People With Dementia ◽  
Moderate Dementia ◽  
Self Reports ◽  
Key Factor ◽  
Person With Dementia ◽  
The Ideal

Pet ownership has been associated with positive outcomes in many populations, yet the associations with physical and psychological wellbeing in people with dementia remain unclear. The current study used baseline data from 1,542 people living at home with mild-to-moderate dementia from the Improving the experience of Dementia and Enhancing Active Life (IDEAL) programme. Regression analyses investigated associations of pet ownership and pet care with self-reports of walking, loneliness, depression, and quality of life (QoL). After adjusting for covariates, having any pet was associated with higher likelihood of walking over 3 hr in the last week. Those with a dog and who were involved in its care were less likely to be lonely than those with no dog. Having any pet but no involvement in its care was associated with increased depression and decreased QoL compared with those without a pet. The key factor in the associations was involvement in the care of the pet by the person with dementia.

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