Through the eyes of others - The social experiences of people with dementia: A systematic literature review and synthesis

Psychosocial models suggest that the lived experience of dementia is affected by interpersonal factors such as the ways in which others view, talk about, and behave toward the person with dementia. This review aimed to illuminate how informal, everyday interpersonal relationships are experienced by people with dementia within their social contexts. A systematic review of qualitative literature published between 1989 and May 2016 was conducted, utilizing the electronic databases PsycINFO, MEDLINE, and CINAHL-Complete. This was followed by a critical interpretative synthesis to understand how people with dementia perceive the attitudes, views, and reactions of other people toward them, and the subjective impact that these have. Four major themes were derived from the findings of the 23 included studies: being treated as an “other” rather than “one of us”; being treated as “lesser” rather than a full, valued member of society; the impact of others’ responses; and strategies to manage the responses of others. Thus, people with dementia can feel outcast and relegated, or indeed feel included and valued by others. These experiences impact upon emotional and psychological well-being, and are actively interpreted and managed by people with dementia. Experiences such as loss and diminishing identity have previously been understood as a direct result of dementia, with little consideration of interpersonal influences. This review notes that people with dementia actively engage with others, whose responses can foster or undermine social well-being. This dynamic relational aspect may contribute to emerging understandings of social health in dementia

Psychosocial interventions for people with dementia: a synthesis of systematic reviews

Objectives: Over the last 10 years there has been a multitude of studies of psychosocial interventions for people with dementia. However, clinical services face a dilemma about which intervention should be introduced into clinical practice because of the inconsistency in some of the findings between different studies and the differences in the study qualities and trustworthiness of evidence. There was a need to provide a comprehensive summary of the best evidence to illustrate what works. Methods: A review of the systematic reviews of psychosocial interventions in dementia published between January 2010 and February 2016 was conducted. Results: Twenty-two reviews (8 physical, 7 cognitive, 1 physical/cognitive and 6 other psychosocial interventions) with a total of 197 unique studies met the inclusion criteria. Both medium to longer-term multi-component exercise of moderate to high intensity, and, group cognitive stimulation consistently show benefits. There is not sufficient evidence to determine whether psychological or social interventions might improve either mood or behaviour due to the heterogeneity of the studies and interventions included in the reviews. Conclusion: There is good evidence that multi-component exercise with sufficient intensity improves global physical and cognitive functions and activities of daily living skills. There is also good evidence that group based cognitive stimulation improves cognitive functions, social interaction and quality of life. This synthesis also highlights the potential importance of group activities to improve social integration for people with dementia. Future research should investigate longer-term specific outcomes, consider the severity and types of dementia, and investigate mechanisms of change

The impact of individual Cognitive Stimulation Therapy (iCST) on cognition, quality of life, caregiver health, and family relationships in dementia: a randomized controlled trial

Background: Cognitive Stimulation Therapy (CST) is a well-established group psychosocial intervention for people with dementia. There is evidence that homebased programmes of cognitive stimulation delivered by family caregivers may benefit both the person and the caregiver. However, no previous studies have evaluated caregiver-delivered CST. This study aimed to evaluate the effectiveness of a home-based, caregiver-led individual Cognitive Stimulation Therapy (iCST) program in (i) improving cognition and quality of life (QoL) for the person with dementia and (ii) mental and physical health (wellbeing) for the caregiver. Methods and Findings: A single-blind, pragmatic randomized trial (RCT) at eight study sites across the UK. The intervention and blinded assessment of outcomes were conducted in participants’ homes. 356 people with mild to moderate dementia and their caregivers recruited from memory services, and community mental health teams. Participants were randomly assigned to iCST (75, 30 minute sessions) or treatment as usual (TAU) control over 25 weeks. iCST sessions consisted of themed activities designed to be mentally stimulating and enjoyable. Caregivers delivering iCST received training and support from an unblind researcher. Primary outcomes were cognition (Alzheimer’s Disease Assessment Scale cognitive [ADAS-Cog]) and self-reported quality of life (QoL) (Quality of Life Alzheimer’s Disease [QoL-AD]) for the person with dementia, and general health status (Short Form-12 [SF-12]) for the caregiver. Secondary outcomes included: quality of the caregiving relationship from the perspectives of the person and of the caregiver (Quality of the Carer Patient Relationships Scale), and health-related QoL (EQ5D) for the caregiver. Intention to treat (ITT) analyses were conducted. At the post-test (26 weeks), there were no differences between the iCST and TAU groups in the outcomes of cognition (MD = -0·55, 95% CI -2·00 to 0·90; p=0·45), and self-reported quality of life (QoL) (MD = -0·02, 95% CI -1·22 to 0·82; p= 0·97) for people with dementia, or caregivers’ general health status (MD=0·13, 95% CI -1·65 to 1·91; p=0·89). However, people with dementia receiving iCST rated the relationship with their caregiver more positively (MD = 1·77, 95% CI 0·26 to 3·28; p=0·02) and iCST improved QoL for caregivers (EQ-5D, MD = 0·06, 95% CI 0·02 to 0·10; p=0·01). Forty percent (72/180) of dyads allocated to iCST completed at least two sessions per week, with 22% (39/180) completing no sessions at all. Study limitations include low adherence to the intervention. Conclusions: There was no evidence that iCST has an effect on cognition or QoL for people with dementia. However, participating in iCST appeared to enhance the quality of the caregiving relationship and caregivers’ QoL

Individual Cognitive Stimulation Therapy for dementia (iCST): study protocol for a randomized controlled trial

Improving the quality of care for people with dementia and their carers has become a national priority in many countries. Cognitive Stimulation Therapy (CST) groups can be beneficial in improving cognition and quality of life for people with dementia. The aim of the current study is to develop and evaluate a home-based individual Cognitive Stimulation Therapy (iCST) programme for people with dementia which can be delivered by their family carer

Reminiscence groups for people with dementia and their family carers: pragmatic eight-centre randomised trial of joint reminiscence and maintenance versus usual treatment: a protocol

The growing number of people with dementia, and the increasing cost of care, provides a major incentive to develop and test methods of supporting them in the community for longer. Most attention has been given to pharmacological interventions, but there is increasing recognition that psychosocial interventions may be equally effective, even preferable where medication has negative side-effects. Reminiscence groups, run by professionals and volunteers, which use photographs, recordings and other objects to trigger personal memories are probably the most popular therapeutic approach to working with people with dementia, but there is little evidence for their effectiveness and cost-effectiveness. The recent inclusion of family carers in groups with people with dementia, notably in our own pilot studies, has generated informal evidence that this joint approach improves relationships between people with dementia and their carers, and benefits both

Data resource profile: the Virtual International Care Home Trials Archive (VICHTA)

IntroductionRandomised controlled trials (RCTs) conducted in care home settings address a range of health conditions impacting older people, but often include a common core of data about residents and the care home environment. These data can be used to inform service provision, but accessing these data can be challenging.MethodsThe Virtual International Care Home Trials Archive (VICHTA) collates care homeRCTs conducted since 2010, with >100 participants, across multiple conditions, with documented eligibility criteria, that were initially identified from a scoping review. A Steering Committee comprising contributing trialists oversees proposed uses of fully anonymised data. We characterised available demography and outcomes to inform potential analyses. Data are accessible via application to the Virtual Trials Archives, through a secure online analysis platform. Trial recruitment is ongoing and future expansion will include international studies.ResultsThe first phase of VICHTA includes data from six UK RCTs, with individual participant data (IPD) on 5674 residents across 308 care homes. IPD include age, sex, dementia status, length of stay, quality of life, clinical outcome measures, medications, resource use, and care home characteristics, such as funding, case mix, and occupancy. Follow-up ranges between four and sixteen months.ConclusionsVICHTA collates and makes accessible data on a complex and under-represented research population for novel analyses, and to inform design of future studies. Planned expansion to include international care home RCTs will facilitate a wider range of research questions. Interested collaborators can submit trial data or request data at www.virtualtrialsarchives.or

Remaining hopeful in early-stage dementia: a qualitative study

Objectives: Improving the quality of life for people living with dementia is widely accepted as an important outcome in dementia care services. Positive psychology, the systematic study of strengths, capacities, and personal resources, is one framework for understanding how a person with dementia might achieve this. This study investigated the subjective experience of hope–a construct from the discipline of positive psychology in older people with early-stage dementia.Method: Ten volunteer participants over the age of 65 years were recruited from a memory clinic in England. Semi-structured interviews were used to explore participants’ hopes, in terms of their personal meaning, their resources, and the potential barriers and facilitators of hope in dementia. Interviews were analyzed using interpretative phenomenological analysis (IPA).Results: Eight themes were extracted, subsumed under two higher-order themes: ‘live in hope or die in despair’ and ‘keep living and keep living well’. Participants described how their internalized hope-fostering beliefs that were often learned during childhood were challenged by the reality of hope-hindering experiences associated with old age and dementia. A balancing process of re-appraisal enhanced resolution and this sense of stability then allowed them to develop positive attitudes towards common age-related constraints in their health and social circumstances.Conclusion: The findings offer insight into the existence, nature, and relevance of hope in the lives of people with early-stage dementia. They provide a useful framework for developing hope-fostering strategies in early interventions that aim to assist individuals with dementia to maintain their quality of life