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

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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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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The Efficacy of Cognitive Stimulation Therapy (CST) for People With Mild-to-Moderate Dementia

European Psychologist ◽

10.1027/1016-9040/a000342 ◽

2019 ◽

Vol 24 (3) ◽

pp. 257-277 ◽

Cited By ~ 15

Author(s):

Alessandra Lobbia ◽

Elena Carbone ◽

Silvia Faggian ◽

Simona Gardini ◽

Federica Piras ◽

...

Keyword(s):

Quality Of Life ◽

Health Status ◽

Cognitive Functioning ◽

Cognitive Stimulation ◽

Present Review ◽

Levels Of Evidence ◽

Cognitive Stimulation Therapy ◽

People With Dementia ◽

Moderate Dementia

Abstract. Cognitive Stimulation Therapy (CST) is an internationally used, evidence-based psychosocial intervention for people with mild-to-moderate dementia. The present review thus aimed specifically to examine the reliability of the findings and the strength of the evidence obtained in studies on the CST protocol concerning any benefit in terms of cognitive functioning, perceived quality of life, psychological, behavioral, and everyday life functioning of people with dementia, and their family caregivers’ health status, quality of life, and burden of care. A systematic literature search on studies specifically adopting the CST protocol in patients with mild-to-moderate DSM-IV dementia – eventually involving their family members – was performed. A total of 238 papers were screened and 12 finally included in the qualitative analysis after inclusion/exclusion criteria were applied. The Jadad Scale and the Stroke Prevention and Educational Awareness Diffusion (SPREAD) method were used to appraise the studies’ methodological quality. Moderate levels of evidence emerged for general cognitive functioning, language comprehension and production, and quality of life. The levels of evidence were weaker for short-term memory, orientation, praxis, depression, social and emotional loneliness, behavior, and communication in people with dementia, and for their caregivers’ health status and anxiety symptoms. Albeit with the limited quality of reviewed evidence, and the need for more studies on CST, the present review highlights the value of this program as part of dementia care services to sustain the cognitive functioning and quality of life of people with dementia.

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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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Cognitive stimulation therapy (CST) for people with dementia in practice: An observational study

British Journal of Occupational Therapy ◽

10.1177/0308022616668358 ◽

2016 ◽

Vol 79 (12) ◽

pp. 762-767 ◽

Cited By ~ 6

Author(s):

Amy Streater ◽

Aimee Spector ◽

Elisa Aguirre ◽

Martin Orrell

Keyword(s):

Quality Of Life ◽

Observational Study ◽

Psychosocial Interventions ◽

Evidence Base ◽

Routine Care ◽

Cognitive Stimulation ◽

Cognitive Stimulation Therapy ◽

People With Dementia ◽

Moderate Dementia

Introduction The delivery of cognitive stimulation as a cognitive based psychosocial intervention for people with mild to moderate dementia is supported in the National Institute for Health and Care Excellence guidelines. There is a strong evidence base for its effectiveness in providing improvements in cognition and quality of life for people with dementia. However, less is known about its delivery and its impact using outcome measures when used in practice. Methods A 1-year observational study was conducted, which measured the cognition and quality of life of 89 people with dementia living in care homes and the community and were in receipt of cognitive stimulation therapy and a maintenance programme as part of their usual care in practice. Results A paired sample T-test demonstrated a significant improvement in cognition. Quality of life remained unchanged for people with mild to moderate dementia. Conclusions This study reports promising findings with demonstrated benefits for people with dementia and strengthens the evidence base supporting its use in routine care. However, attention should be given to the level of cognitive impairment of attendees. This research is relevant to the field of occupational therapy as the profession has knowledge of using psychosocial interventions and a commitment to evidence-based practice.

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Perceived Overprotection and Its Association With Quality of Life in Dementia

GeroPsych ◽

10.1024/1662-9647/a000207 ◽

2019 ◽

Vol 32 (3) ◽

pp. 125-134

Author(s):

Mechthild Niemann-Mirmehdi ◽

Andreas Häusler ◽

Paul Gellert ◽

Johanna Nordheim

Keyword(s):

Quality Of Life ◽

Patient Autonomy ◽

Positive Association ◽

Well Being ◽

Negative Association ◽

Significant Positive Association ◽

Cross Sectional ◽

People With Dementia ◽

Mental Well Being

Abstract. To date, few studies have focused on perceived overprotection from the perspective of people with dementia (PwD). In the present examination, the association of perceived overprotection in PwD is examined as an autonomy-restricting factor and thus negative for their mental well-being. Cross-sectional data from the prospective DYADEM study of 82 patient/partner dyads (mean age = 74.26) were used to investigate the association between overprotection, perceived stress, depression, and quality of life (QoL). The analyses show that an overprotective contact style with PwD has a significant positive association with stress and depression, and has a negative association with QoL. The results emphasize the importance of avoiding an overprotective care style and supporting patient autonomy.

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Comparative Study of Burnout in Professional Caregivers of Institutionalized Elderly with Dementia and other Diseases

European Journal of Investigation in Health, Psychology and Education ◽

10.3390/ejihpe1020005 ◽

2011 ◽

Vol 1 (2) ◽

pp. 61-70

Author(s):

Inmaculada Méndez ◽

Esther Secanilla ◽

Juan P. Martínez ◽

Josefa Navarro

Keyword(s):

Quality Of Life ◽

Ad Hoc ◽

Maslach Burnout Inventory ◽

Well Being ◽

Measuring Instruments ◽

Global Approach ◽

People With Dementia ◽

Quality Of Patient Care ◽

Psychoeducational Programs

In a global approach about the need of paying attention to staff working with and for older people with dementia and other diseases in residential care, it is necessary to investigate their emotional well-being to provide strategies to improve their quality of life and therefore their quality of patient care. Professional caregivers of people with dementia and other diseases have specific psycho-sociological problems. They are more prone to stress which can sometimes lead to the “burnout” due to specific functions in the workplace. To define the sample was decided to compare two residential centers of two regions, Murcia and Barcelona. We proceeded to the administration of the following measuring instruments: the scale Maslach Burnout Inventory (MBI) and an ad hoc survey conducted for professional caregivers. Finally, the results offer the possibility of carrying out programs to prevent emotional exhaustion in professional carers, as well as the possibility of designing psychoeducational programs for staff care and even future proactive and reactive interventions.

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Understanding the Link between Family Caregiver Quality of Life and the Care Provided to Older People With Dementia

Innovation in Aging ◽

10.1093/geroni/igaa057.500 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 153-154

Author(s):

Afeez Hazzan

Keyword(s):

Quality Of Life ◽

Quality Of Care ◽

Older People ◽

Family Caregivers ◽

Family Caregiver ◽

Well Being ◽

The United States ◽

People With Dementia ◽

The Impact

Abstract Dementia is one of the most rapidly growing diseases in the United States. In 2018, the direct costs to American society of caring for older people with dementia was approximately $277 billion. Primary informal caregivers are mainly responsible for the care of older people with dementia including Alzheimer’s disease. Caregivers perform a myriad of duties ranging from shopping for their loved ones’ groceries, helping with medications, and managing finances. The caregiving role becomes more demanding as the disease progresses over time, and studies have shown that the quality-of-life (QoL) experienced by caregivers of older adults who have dementia is lower than the QoL of caregivers for older people who do not have dementia. To the best of our knowledge, there has been no research conducted to investigate whether lower caregiver QoL affects the level or quality of care that caregivers provide to persons with dementia. In the current study, we interviewed family caregivers living in Rochester, New York to inquire about their quality of life and the care provided to older people living with dementia. Further, caregivers completed the 36-item Short Form Health Survey (SF-36) as well as a draft questionnaire for measuring the quality of care provided to older people living with dementia. Both quantitative and qualitative findings from this study reveals important relationships between family caregiver QoL and the care provided, including the impact of social support and financial well-being. The study findings could have significant impact, particularly for the provision of much needed support for family caregivers.

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Comparison of mental health, well-being and parenting sense of competency among Australian and South-East Asian parents of autistic children accessing early intervention in Australia

Autism ◽

10.1177/13623613211010006 ◽

2021 ◽

pp. 136236132110100

Author(s):

Jodie Smith ◽

Rhylee Sulek ◽

Ifrah Abdullahi ◽

Cherie C Green ◽

Catherine A Bent ◽

...

Keyword(s):

Quality Of Life ◽

Mental Health ◽

Early Intervention ◽

East Asian ◽

Well Being ◽

Cultural Background ◽

Autistic Children ◽

Community Based ◽

Health Quality

Parents from individualist cultures (those focused on autonomy of individuals; that is, Australian) may view their autistic children differently compared to parents from collectivist cultures (where community needs are valued over an individual’s, that is, South-East Asian cultures). As most research on autism and parenting has been undertaken in Western individualist cultures, knowledge of parenting beliefs and mental health within collectivist cultures is lacking. We compared the mental health, quality of life, well-being and parenting sense of competency between families raising an autistic child from two groups: 97 Australian parents and 58 parents from South-East Asian backgrounds. Children from both groups were receiving the same community-based early intervention. No group differences were found on the measures of mental health but, when compared to Australian parents, parents from South-East Asian backgrounds reported higher well-being and less impact on their quality of life resulting from their child’s autism-specific difficulties. Furthermore, a positive association between well-being and quality of life was only observed for South-East Asian parents. Hence, the views of, and responses to, disability for South-East Asian parents may act as a protective factor promoting well-being. This novel research indicates that culture plays a role in parenting autistic children and highlights the need to accurately capture cultural background information in research. Lay abstract We know that parents of autistic children experience poorer mental health and lower well-being than parents of non-autistic children. We also know that poorer mental health among parents of autistic children has been observed across different cultures. Most research focuses on Western cultures, so we know little about parental mental health and well-being of parents from different cultural backgrounds; yet, it is likely that cultural background contributes to how parents view their child’s condition and respond to the diagnosis. Here, we compared mental health, quality of life and well-being between families raising an autistic child from Australian backgrounds to families from South-East Asian backgrounds. All children in the current study were receiving the same community-based early intervention. When compared to the general population, parents had poorer mental health overall, but there were no differences between the two groups of parents. However, parents from South-East Asian backgrounds reported higher well-being and fewer difficulties associated with their child’s autism. These findings suggest that cultural background likely influences not only parent’s view of, and response to, their child’s autism, but also their own sense of well-being. As researchers and clinicians working with families of autistic children, we should more explicitly consider family’s cultural background within our work.

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Systematic review of the effectiveness of non-pharmacological interventions to improve quality of life of people with dementia

International Psychogeriatrics ◽

10.1017/s1041610211002614 ◽

2012 ◽

Vol 24 (6) ◽

pp. 856-870 ◽

Cited By ~ 116

Author(s):

Claudia Cooper ◽

Naaheed Mukadam ◽

Cornelius Katona ◽

Constantine G. Lyketsos ◽

David Ames ◽

...

Keyword(s):

Quality Of Life ◽

Coping Strategy ◽

Cognitive Stimulation ◽

Care Homes ◽

Improve Quality ◽

Family Carer ◽

Pharmacological Interventions ◽

People With Dementia ◽

At Home

ABSTRACTBackground: People with dementia report lower quality of life, but we know little about what interventions might improve it.Methods: We systematically reviewed 20 randomized controlled trials reporting the effectiveness of non-pharmacological interventions in improving quality of life or well-being of people with dementia meeting predetermined criteria. We rated study validity with a checklist. We contacted authors for additional data. We calculated standardized mean differences (SMD) and, for studies reporting similar interventions, pooled standardized effect sizes (SES).Results: Pooled analyses found that family carer coping strategy-based interventions (four studies, which did not individually achieve significance; n = 420; SES 0.24 (range 0.03–0.45)) and combined patient activity and family carer coping interventions (two studies, not individually significant; n = 191; SES 0.84 (range 0.54–1.14)) might improve quality of life. In one high-quality study, a care management system improved quality of life of people with dementia living at home. Group Cognitive Stimulation Therapy (GCST) improved quality of life of people with dementia in care homes.Conclusion: Preliminary evidence indicated that coping strategy-based family carer therapy with or without a patient activity intervention improved quality of life of people with dementia living at home. GCST was the only effective intervention in a higher quality trial for those in care homes, but we did not find such evidence in the community. Few studies explored whether effects continued after the intervention stopped. Future research should explore the longer-term impact of interventions on, and devise strategies to increase, life quality of people with dementia living in care homes or at home without a family carer.

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