scholarly journals Living Alone with Mild-To-Moderate Dementia: Findings from the IDEAL Cohort

2020 ◽  
Vol 78 (3) ◽  
pp. 1207-1216
Author(s):  
Linda Clare ◽  
Anthony Martyr ◽  
Catherine Henderson ◽  
Laura Gamble ◽  
Fiona E. Matthews ◽  
...  
Keyword(s):  
Home Care ◽  
Significant Proportion ◽  
Well Being ◽  
Living Alone ◽  
Living Situation ◽  
Care Services ◽  
People With Dementia ◽  
Moderate Dementia ◽  
Health And Social Care ◽  
The Ideal

Background: A significant proportion of people with dementia live alone, but little is known about their specific needs. Objective: To understand the profile of people living alone with mild-to-moderate dementia in the UK and identify any systematic differences associated with living situation. Methods: We analyzed cross-sectional data from 1,541 people with mild-to-moderate dementia and 1,277 caregivers participating in the IDEAL cohort at the first wave of assessment. Results: There were 1,256 (81.5%) people with dementia living with others and 285 (18.5%) living alone, of whom 51 (3% of whole sample) reported little or no informal support. There were relatively few differences associated with living situation and odds ratios were generally small. People living alone were older on average, and more likely to be female, than those living with others. Those living alone were more likely to have higher cognitive ability and self-reported functional ability, and more social contact with those from other households. They were also lonelier, expressed less satisfaction with life, and used home care services and equipment more. There were no differences in symptoms, mood, quality of life, or well-being. Conclusion: The findings support the view that it is possible to ‘live well’ with mild-to-moderate dementia while living alone, given appropriate support, including home care and equipment. Nevertheless, it is important to consider how those living alone may be supported to have a more satisfactory experience, and how health and social care services can best respond to their needs.

scholarly journals Discontinuity in the Subjective Experience of Self Among People with Mild-To-Moderate Dementia Is Associated with Poorer Psychological Health: Findings from the IDEAL Cohort

2020 ◽  
Vol 77 (1) ◽  
pp. 127-138
Author(s):  
Linda Clare ◽  
Anthony Martyr ◽  
Robin G. Morris ◽  
Lynette J. Tippett
Keyword(s):  
Psychological Health ◽  
Subjective Experience ◽  
Significant Proportion ◽  
Well Being ◽  
Psychological Well Being ◽  
Living Well ◽  
People With Dementia ◽  
Moderate Dementia ◽  
Increased Risk ◽  
The Ideal

Background: The onset and progression of dementia can result in changes in the subjective experience of self, impacting on psychological health. Objective: We aimed to explore the extent to which people with mild-to-moderate dementia experience discontinuity in the subjective experience of self, and the factors associated with this experience for people with dementia and their family caregivers. Methods: We used data from the baseline assessment of the IDEAL cohort. Discontinuity in the subjective experience of self was assessed by asking participants about their agreement with the statement ‘I feel I am the same person that I have always been’. Participants were divided into those who did and did not experience discontinuity, and the two groups were compared in terms of demographic and disease-related characteristics, psychological well-being, measures of ‘living well’, and caregiver stress. Results: Responses to the continuity question were available for 1,465 participants with dementia, of whom 312 (21%) reported experiencing discontinuity. The discontinuity group experienced significantly poorer psychological well-being and had significantly lower scores on measures of ‘living well’. There was no clear association with demographic or disease-related characteristics, but some indication of increased caregiver stress. Conclusion: A significant proportion of people with mild-to-moderate dementia describe experiencing discontinuity in the subjective sense of self, and this is associated with poorer psychological health and reduced ability to ‘live well’ with the condition. Sensitively asking individuals with dementia about the subjective experience of self may offer a simple means of identifying individuals who are at increased risk of poor well-being.

scholarly journals LONELINESS, ISOLATION, AND LIVING ALONE AMONG PEOPLE WITH DEMENTIA AND THEIR CARERS: INSIGHTS FROM THE IDEAL STUDY

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S39-S39
Author(s):  
Christina Victor ◽  
Elizabeth B Fauth
Keyword(s):  
Research Programme ◽  
Well Being ◽  
Network Size ◽  
Living Well ◽  
People With Dementia ◽  
Moderate Dementia ◽  
Scale Range ◽  
Key Indicators ◽  
The Ideal

Abstract The IDEAL research programme is national nine-year (2014-2022) ESRC/NIHR/Alzheimer’s Society UK funded longitudinal cohort study of 1547 people with mild to moderate dementia and 1283 family members or friends who provide support and aims to identify what promotes (or inhibits) people living well with dementia and their carers and how these change longitudinally. Loneliness and/or isolation are key indicators of quality of life and living well is posited as a factor which compromises wellbeing. Loneliness was measured using both the six-item de Jong Gierveld (DJG) scale (range 0-6) and isolation by the six-item Lubben social network scale (range 0 to 30). The three presentations in this symposium use data from the baseline assessment. Clare focuses upon the 18.5% of our participants who live alone and compares them with those living with others and suggests that there are few systematic differences in terms of cognition, psychological factors and well-being between these groups. Using a score of 5+ on the DJG scale, Victor reports that for people with dementia 5 % were severely lonely, which approximates to the national norm, compared with 17% for caregivers. For social isolation people with dementia had smaller social networks (mean =15.1) and higher levels of isolation as measured by a score of 12 or less on the Lubben scale (35%) compared with caregivers (mean network size=17.1 and 18% isolated). Victor and Clare use dyad data for 1089 pairs for loneliness and 1204 for isolation demonstrating congruence of 43% for loneliness and 68% for isolation

scholarly journals Does awareness of condition help people with mild-to-moderate dementia to live well? Findings from the IDEAL programme

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Catherine M. Alexander ◽  
Anthony Martyr ◽  
Laura D. Gamble ◽  
Sharon A. Savage ◽  
Catherine Quinn ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Life Satisfaction ◽  
Clinical Care ◽  
Well Being ◽  
Cross Sectional ◽  
Living Well ◽  
People With Dementia ◽  
Moderate Dementia ◽  
The Ideal

Abstract Background People living with dementia vary in awareness of their abilities. We explored awareness of the condition and diagnosis in people with mild-to-moderate dementia, and how this relates to quality of life, well-being, life satisfaction, and caregiver stress. Methods This study was a cross-sectional exploratory analysis of data from the IDEAL cohort, which recruited people with dementia living at home and available caregivers from 29 research sites in Great Britain. Our study included 917 people with mild-to-moderate dementia and 755 carers. Low and high awareness groups were derived from self-reported responses to a dementia representation measure. Logistic regression was used to explore predictors of awareness of condition and diagnosis using demographic, cognitive, functional and psychological measures, and the relationship with quality of life, well-being and life satisfaction (‘living well’), and caregiver stress. Results There were 83 people with low awareness of their condition. The remaining 834 people showed some awareness and 103 of these had high awareness of their condition and diagnosis. Psychosocial factors were stronger predictors of awareness than cognitive and functional ability. Those with higher awareness reported lower mood, and lower scores on indices of living well as well as lower optimism, self-efficacy and self-esteem. Low awareness was more likely in those aged 80y and above, and living in more socially deprived areas. No relationship was seen between caregiver stress and awareness. Conclusions Awareness of the condition and diagnosis varies in people with mild-to-moderate dementia and is relevant to the capability to live well. Awareness should be considered in person-centered clinical care.

scholarly journals Person-centered dementia care in home care services – highly recommended but still challenging to obtain: a qualitative interview study

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Kari-Anne Hoel ◽  
Anne Marie Mork Rokstad ◽  
Ingvild Hjorth Feiring ◽  
Bjørn Lichtwarck ◽  
Geir Selbæk ◽  
...  
Keyword(s):  
Decision Making ◽  
Home Care ◽  
Shared Decision Making ◽  
Care Service ◽  
Home Care Services ◽  
Shared Decision ◽  
Care Services ◽  
Person Centered Care ◽  
People With Dementia ◽  
Centered Care

Abstract Background Dementia is one of the main causes of disability and dependence in older people, and people with dementia need comprehensive healthcare services, preferably in their own homes. A well-organized home care service designed for people with dementia is necessary to meet their needs for health- and social care. Therefore, it is important to gain knowledge about how people with dementia experience the home care service and if the service responds to their wishes and needs. The aim of this study was to explore the experience of home care services among people with dementia, to understand the continuity in services, how the service was adapted to people with dementia, and how the patient experienced person-centered care and shared decision-making. Methods We used a qualitative, exploratory design based on a phenomenological-hermeneutic approach and performed individual in-depth interviews with persons with dementia. A convenience sample of 12 persons with moderate to severe degrees of dementia from four Norwegian municipalities participated in the study. The interviews were conducted in February 2019. Results The findings identified that the participants appreciated the possibility to stay safely in their own homes and mostly experienced good support from staff. They expressed various views and understanding of the service and experienced limited opportunities for user involvement and individualized, tailored service. The overall theme summarizing the findings was: “It is difficult for people with dementia to understand and influence home care services, but the services facilitate the possibility to stay at home and feel safe with support from staff.” Conclusion The participants did not fully understand the organization of the care and support they received from the home care services, but they adapted to the service without asking for changes based on their needs or desires. Although person-centered care is recommended both nationally and internationally, the participants experienced little inclusion in defining the service they received, and it was perceived as unclear how they could participate in shared decision-making.

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.

scholarly journals An evaluation of community-based cognitive stimulation therapy: a pilot study with an Irish population of people with dementia

2016 ◽  
Vol 34 (3) ◽  
pp. 157-167 ◽  
Author(s):  
M. E. Kelly ◽  
S. Finan ◽  
M. Lawless ◽  
N. Scully ◽  
J. Fitzpatrick ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cognitive Function ◽  
Well Being ◽  
Cognitive Stimulation ◽  
Post Intervention ◽  
Community Based ◽  
People With Dementia ◽  
Moderate Dementia ◽  
Subjective Cognitive Function

ObjectivesResearch shows that cognitive stimulation therapy (CST) improves cognitive function, quality of life, and well-being of people with mild–moderate dementia. Despite consistent evidence and recommendations, CST is not routinely available in Ireland post-diagnosis. The aim of the current research was to develop and evaluate community-based CST for people with mild–moderate dementia, run by the Alzheimer Society of Ireland across four pilot sites in Ireland.MethodsParticipants with mild–moderate dementia attended once weekly CST sessions for 14 weeks. Baseline and post-intervention assessments were completed by CST participants, carers, and CST facilitators. Primary outcomes of interest for CST participants included quality of life (Quality of Life in Alzheimer Disease Scale), cognitive function (Montreal Cognitive Assessment), and subjective cognitive function (Memory Awareness Rating Scale-Functioning Subscale). Secondary outcomes included well-being, cognitive ability, satisfaction with cognitive performance, and engagement and confidence of CST participants; well-being of carers; and job satisfaction of facilitators. Post-intervention interviews supplemented quantitative analyses.ResultsIn total, 20 CST participants, 17 carers, and six CST facilitators completed evaluation assessments. Results showed that CST improved participants’ satisfaction with cognitive performance (p=0.002), level of engagement (p=0.046), level of confidence (p=0.026). Improvements on subjective cognitive function just fell short of significance (p=0.055). Qualitative analysis of interview data identified consistent themes of cognitive and overall benefits of CST; and provided support for quantitative data.ConclusionsCommunity-based CST positively impacted the lives of people with dementia and their families. This study supports prior recommendations that CST should be made routinely available to people with mild–moderate dementia, particularly in light of the lack of post-diagnostic interventions currently offered in Ireland.

Public preferences for home care services for people with dementia: A discrete choice experiment on personhood

2020 ◽  
Vol 245 ◽  
pp. 112675 ◽  
Author(s):  
Sharon Walsh ◽  
Eamon O'Shea ◽  
Tom Pierse ◽  
Brendan Kennelly ◽  
Fiona Keogh ◽  
...  
Keyword(s):  
Home Care ◽  
Discrete Choice Experiment ◽  
Discrete Choice ◽  
Choice Experiment ◽  
Home Care Services ◽  
Public Preferences ◽  
Care Services ◽  
People With Dementia

Decentralisation of long-term care in the Netherlands: the case of day care at green care farms for people with dementia

2013 ◽  
Vol 35 (4) ◽  
pp. 704-724 ◽  
Author(s):  
STÉPHANIE J. M. NOWAK ◽  
CLAUDIA C. M. MOLEMA ◽  
CAROLINE A. BAAN ◽  
SIMON J. OOSTING ◽  
LENNEKE VAANDRAGER ◽  
...  
Keyword(s):  
The Netherlands ◽  
Day Care ◽  
Central Government ◽  
Municipal Services ◽  
Term Care ◽  
Care Services ◽  
People With Dementia ◽  
Health And Social Care ◽  
Green Care Farms

ABSTRACTResponsibility for health and social care services is being delegated from central to local authorities in an increasing number of countries. In the Netherlands, the planned transfer of responsibility for day care for people with dementia from the central government to municipalities is a case in point. The impacts of this decentralisation process for innovative care concepts such as day care at green care farms are largely unknown. We therefore interviewed representatives of municipalities and green care farms to explore what consequences they expected of decentralisation for their organisations and people with dementia. Our study shows that communication and collaboration between municipalities and green care farms is relatively limited. Consequently, municipalities are insufficiently aware of how green care farms can help them to perform their new tasks and green care farmers know little about what municipalities expect from them in the new situation. We therefore recommend that municipalities and green care farms keep each other informed about their responsibilities, duties and activities to ensure a tailored package of future municipal services for people with dementia.

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.

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