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

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

Innovation in Aging ◽

10.1093/geroni/igz038.153 ◽

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

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Factors associated with self- and informant ratings of quality of life, well-being and life satisfaction in people with mild-to-moderate dementia: results from the Improving the experience of Dementia and Enhancing Active Life programme

Age and Ageing ◽

10.1093/ageing/afz177 ◽

2020 ◽

Vol 49 (3) ◽

pp. 446-452 ◽

Cited By ~ 3

Author(s):

Yu-Tzu Wu ◽

Sharon M Nelis ◽

Catherine Quinn ◽

Anthony Martyr ◽

Ian R Jones ◽

...

Keyword(s):

Quality Of Life ◽

Life Satisfaction ◽

Well Being ◽

Social Psychological ◽

Informant Ratings ◽

Factors Associated ◽

Active Life ◽

People With Dementia ◽

Moderate Dementia

Abstract Background a large number of studies have explored factors related to self- and informant ratings of quality of life in people with dementia, but many studies have had relatively small sample sizes and mainly focused on health conditions and dementia symptoms. The aim of this study is to compare self- and informant-rated quality of life, life satisfaction and well-being, and investigate the relationships of the two different rating methods with various social, psychological and health factors, using a large cohort study of community-dwelling people with dementia and carers in Great Britain. Methods this study included 1,283 dyads of people with mild-to-moderate dementia and their primary carers in the Improving the experience of Dementia and Enhancing Active Life study. Multivariate modelling was used to investigate associations of self- and informant-rated quality of life, life satisfaction and well-being with factors in five domains: psychological characteristics and health; social location; capitals, assets and resources; physical fitness and health; and managing everyday life with dementia. Results people with dementia rated their quality of life, life satisfaction and well-being more highly than did the informants. Despite these differences, the two approaches had similar relationships with social, psychological and physical health factors in the five domains. Conclusion although self- and informant ratings differ, they display similar results when focusing on factors associated with quality of life, life satisfaction and well-being. Either self- or informant ratings may offer a reasonable source of information about people with dementia in terms of understanding associated factors.

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

BMC Geriatrics ◽

10.1186/s12877-021-02468-4 ◽

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.

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Non-Pharmacologic Interventions for Caregivers of People With Dementia in Latin America: A Review

Innovation in Aging ◽

10.1093/geroni/igaa057.881 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 275-276

Author(s):

Jose Aravena ◽

Jean Gajardo ◽

Laura Gitlin

Keyword(s):

Quality Of Life ◽

Latin America ◽

Depressive Symptoms ◽

Latin American ◽

Randomized Clinical Trials ◽

Social Inequalities ◽

Neuropsychiatric Symptoms ◽

People With Dementia ◽

Person With Dementia

Abstract In a scenario of increasing longevity and social inequalities, Latin-America is an important contributor to the worldwide dementia burden. Caregivers’ health is fundamental to maintain the person with dementia quality of life. However, caregiving is a culturally sensible role that requires tailored solutions. The aim is to synthesize the evidence about non-pharmacologic interventions targeted to caregivers of people with dementia in Latin-American contexts. A comprehensive review of interventions in caregivers and persons with dementia in Latin-American countries was conducted using MEDLINE, Embase, PsycINFO, and Scopus with studies published until January 27th, 2020. Randomized clinical trials of non-pharmacologic interventions targeted to caregivers of people with dementia or dyads where included. Qualitative synthesis of the evidence was presented and analyzed. Overall, 9 pilot RCT were included for the final analysis (6 Brazil, 1 Colombia, 1 Mexico, 1 Perú). The biggest study recruited 69 caregivers and the smallest 13 dyads, with follow-up range of 3-6 months. 5 control groups received at least some other non-standard care type of intervention. 8 were targeted exclusively to caregivers (4 group intervention, 3 individual, and 1 combined) and 1 multicomponent intervention. Most frequent measured outcomes were caregiver’s burden, anxiety, depressive symptoms, and quality of life, and person with dementia neuropsychiatric symptoms. Individual interventions report better results in caregiver parameters such as burden and depressive symptoms and person with dementia neuropsychiatric symptoms. Group interventions presented mixed results. Nevertheless, the quality of evidence was low. There is a critical need to study interventions for caregivers in Latin-American contexts.

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Pilot Randomised Evaluation of Singing in Dementia (PRESIDE): protocol for a two-arm, parallel-group randomised controlled feasibility study with waiting-list control

Pilot and Feasibility Studies ◽

10.1186/s40814-020-00759-y ◽

2021 ◽

Vol 7 (1) ◽

Author(s):

Becky Dowson ◽

Justine Schneider ◽

Boliang Guo ◽

Philip M. Bath ◽

Orii McDermott ◽

...

Keyword(s):

Quality Of Life ◽

Randomised Controlled Trial ◽

Controlled Trial ◽

Waiting List ◽

Community Group ◽

People With Dementia ◽

Parallel Group ◽

Randomised Controlled ◽

Person With Dementia

Abstract Background As the number of people living with dementia grows, so does the need to provide them with adequate psychosocial support. Many people with dementia live at home with family carers, who also require social and emotional support to cope with their role. Community group singing has received attention for its potential to support people with dementia and their carers. It is postulated that singing can improve cognitive function, strengthen the bonds between care partners and help to establish social support networks. However, there is a lack of rigorous evidence of singing’s benefits for this population. This study aims to test the feasibility of a randomised controlled trial of community singing in dementia, to pave the way for a larger, conclusive study. Methods The PRESIDE study is designed as a two-arm, parallel-group randomised trial with a waiting list control. Dyads consisting of a person with dementia (n = 80) and their carer (n = 80) will be recruited. Each dyad will be randomised either to attend 10 weeks of community group singing sessions straight away or to wait for 3 months before attending the sessions. The singing sessions will be led by experienced professional musicians and will last about 90 min, including time for socialising. The primary outcome of this study is the attainment of feasibility criteria around recruitment, retention and the acceptability of the waiting list control. Secondary outcomes include the quality of life, mood, cognition, and musical engagement of the person with dementia, and quality of life, mood, and experiences/challenges of the carer. These data will be collected during home visits at baseline, and 3 and 6 months post-baseline. Discussion Despite growing public interest in the positive effects of singing, and encouraging findings from qualitative and non-randomised quantitative studies, there is a lack of rigorous evidence. This is the first randomised controlled trial of community group singing for people with dementia in Europe, to our knowledge. If the results favour a full trial, conclusively demonstrating the effectiveness of group singing could positively affect the opportunities available to community-dwelling people with dementia and their carers. Trial registration Unique identification number in ISRCTN registry: ISRCTN10201482. Date registered: 12 May 2020

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

Irish Journal of Psychological Medicine ◽

10.1017/ipm.2016.23 ◽

2016 ◽

Vol 34 (3) ◽

pp. 157-167 ◽

Cited By ~ 3

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.

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Management of dementia

10.1093/med/9780199644957.003.0039 ◽

2013 ◽

Author(s):

Sarah Cullum

Keyword(s):

End Of Life Care ◽

Psychological Symptoms ◽

Life Care ◽

Environmental Aspects ◽

Limited Ability ◽

People With Dementia ◽

Early Dementia ◽

Person With Dementia ◽

Do So

The management of dementia discusses the needs of people in both the early and later stages of dementia, focusing on social and environmental aspects as well as physical and psychological. The main management tasks in early dementia are helping the person with dementia and their family come to terms with the diagnosis, optimising quality of life in the present, and planning for the future. In later dementia we deal with maintaining person-hood, the emergence of behavioural and psychological symptoms of dementia, making decisions for a person who no longer has capacity to do so for themselves, and end of life care in people who are increasingly frail and have limited ability to communicate their needs. Underpinning all of these is the need for respect and communication, and to provide person-centred and relationship-centred care for people with dementia and their carers.

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Evaluation of the ‘Unforgettable’ art programme by people with dementia and their care-givers

Ageing and Society ◽

10.1017/s0144686x19001089 ◽

2019 ◽

pp. 1-19

Author(s):

Iris Hendriks ◽

Franka J. M. Meiland ◽

Debby L. Gerritsen ◽

Rose-Marie Dröes

Keyword(s):

Background Characteristics ◽

Single Group ◽

Group Design ◽

Care Givers ◽

People With Dementia ◽

Face Scale ◽

Before And After ◽

Key Factor ◽

Smiley Face

AbstractArt programmes have been shown to contribute to the quality of life of people with dementia. To understand how people with dementia benefit from art programmes it is important to evaluate them. ‘Unforgettable’ is an interactive museum programme for people with dementia and their care-givers in the Netherlands. This study examined how it is experienced and appreciated by its users. It also investigated whether the user experience and appreciation are linked to their specific background characteristics. In a single-group design, we used a ‘take-home’ survey to collect the participants’ background characteristics and their experience and appreciation of the programme. A before and after intervention measurement took place, using a smiley face scale, to measure the change in mood of participants. Participants evaluated the programme very positively. Social interaction proved a key factor in their appreciation. The mood of the persons with dementia (N = 95) and care-givers (N = 104) improved after participation in the ‘Unforgettable’ programme. The results of this evaluation may contribute to the quality of art programmes in museums.

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

10.31219/osf.io/zkwyr ◽

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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Pilot Randomised Evaluation of Singing in Dementia (PRESIDE): protocol for a two-arm, parallel group randomised controlled feasibility study with waiting-list control

10.21203/rs.3.rs-44887/v2 ◽

2020 ◽

Author(s):

Becky Dowson ◽

Justine Schneider ◽

Boliang Guo ◽

Philip M Bath ◽

Orii McDermott ◽

...

Keyword(s):

Quality Of Life ◽

Randomised Controlled Trial ◽

Controlled Trial ◽

Waiting List ◽

Community Group ◽

People With Dementia ◽

Parallel Group ◽

Randomised Controlled ◽

Person With Dementia

Abstract BackgroundAs the number of people living with dementia grows, so does the need to provide them with adequate psychosocial support. Many people with dementia live at home with family carers, who also require social and emotional support to cope with their role. Community group singing has received attention for its potential to support people with dementia and their carers. It is postulated that singing can improve cognitive function, strengthen the bonds between care partners, and help to establish social support networks. However, there is a lack of rigorous evidence of singing’s benefits for this population. This study aims to test the feasibility of a randomised controlled trial of community singing in dementia, to pave the way for a larger, conclusive study.MethodsThe PRESIDE study is designed as a two-arm, parallel group randomised trial with a waiting list control. Dyads consisting of a person with dementia (n=80) and their carer (n=80) will be recruited. Each dyad will be randomised either to attend 10 weeks of community group singing sessions straight away, or to wait for three months before attending the sessions. The singing sessions will be led by experienced professional musicians and will last about 90 minutes, including time for socialising. The primary outcome of this study is the attainment of feasibility criteria around recruitment, retention and the acceptability of the waiting list control. Secondary outcomes include the quality of life, mood, cognition, and musical engagement of the person with dementia, and quality of life, mood, and experiences/challenges of the carer. These data will be collected during home visits at baseline, and three and six months post-baseline. DiscussionDespite growing public interest in the positive effects of singing, and encouraging findings from qualitative and non-randomised quantitative studies, there is a lack of rigorous evidence. This is the first randomised controlled trial of community group singing for people with dementia in Europe, to our knowledge. If the results favour a full trial, conclusively demonstrating the effectiveness of group singing could positively affect the opportunities available to community-dwelling people with dementia and their carers.Trial RegistrationUnique identification number in ISRCTN registry: ISRCTN10201482 https://www.isrctn.com/ISRCTN10201482. Date registered: 12/05/2020

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