Memory and communication support in dementia: research-based strategies for caregivers

2010 ◽  
Vol 23 (2) ◽  
pp. 256-263 ◽  
Author(s):  
Erin R. Smith ◽  
Megan Broughton ◽  
Rosemary Baker ◽  
Nancy A. Pachana ◽  
Anthony J. Angwin ◽  
...  
Keyword(s):  
Knowledge Translation ◽  
Research Evidence ◽  
Speech Pathology ◽  
Communication Support ◽  
Caregiver Education ◽  
People With Dementia ◽  
Consumer Feedback ◽  
Dementia Research ◽  
Person With Dementia ◽  
With Memory

ABSTRACTBackground: Difficulties with memory and communication are prominent and distressing features of dementia which impact on the person with dementia and contribute to caregiver stress and burden. There is a need to provide caregivers with strategies to support and maximize memory and communication abilities in people with dementia. In this project, a team of clinicians, researchers and educators in neuropsychology, psychogeriatrics, nursing and speech pathology translated research-based knowledge from these fields into a program of practical strategies for everyday use by family and professional caregivers.Methods: From the available research evidence, the project team identified compensatory or facilitative strategies to assist with common areas of difficulty, and structured these under the mnemonics RECAPS (for memory) and MESSAGE (for communication). This information was adapted for presentation in a DVD-based education program in accordance with known characteristics of effective caregiver education.Results: The resultant DVD comprises (1) information on the nature and importance of memory and communication in everyday life; (2) explanations of common patterns of difficulty and preserved ability in memory and communication across the stages of dementia; (3) acted vignettes demonstrating the strategies, based on authentic samples of speech in dementia; and (4) scenarios to prompt the viewer to consider the benefits of using the strategies.Conclusion: Using a knowledge-translation framework, information and strategies can be provided to family and professional caregivers to help them optimize residual memory and communication in people with dementia. Future development of the materials, incorporating consumer feedback, will focus on methods for enabling wider dissemination.

The Emergence of the Person in Dementia Research

1997 ◽  
Vol 17 (5) ◽  
pp. 597-607 ◽  
Author(s):  
MURNA DOWNS
Keyword(s):  
Support Groups ◽  
Sense Of Self ◽  
Medical Model ◽  
Disease Process ◽  
People With Dementia ◽  
Dementia Research ◽  
The Individual ◽  
And Coping ◽  
Person With Dementia ◽  
The Impact

The purpose of this review is to identify and explore the emerging attention being paid to the individual in dementia research. Following a brief introduction, the review will examine literature which recognises three aspects of the person with dementia: the individual's sense of self; the person's rights; and the value to be gained from a concern with the perspectives of people with dementia. To date the medical model has dominated dementia research. This model tends to reduce the person with dementia to his/her neurobiology or neuropsychology (Cotrell and Schulz 1993). The experience and manifestation of dementia has been attributed solely to the disease process, with a consequent neglect of the psychosocial context surrounding the individual (Lyman 1989). Research on the psychosocial aspects of dementia has concentrated on family carers. Keady (1996) provides a useful categorisation of this research into the following topics: gender and coping style; marital relationships and the impact of dementia; access to information and services; participation in and effectiveness of support groups; adjustment and circumstances surrounding admission into care; and perception of own health needs. No literature focuses on people with dementia.

scholarly journals To Lie or Not to Lie: The Views of People With Dementia and Their Carers

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 758-758
Author(s):  
Dympna Casey ◽  
Una Lynch ◽  
Adeline Cooney ◽  
Catherine Houghton ◽  
Siobhan Smyth ◽  
...  
Keyword(s):  
Focus Groups ◽  
Qualitative Methodology ◽  
Cognitive Symptoms ◽  
Know How ◽  
Memory Problems ◽  
People With Dementia ◽  
Informal Carers ◽  
Person With Dementia ◽  
With Memory ◽  
Purposive Sample

Abstract In Ireland over 36,000 people with dementia live at home cared for by informal carers. Yet often these carers do not know how to deal with cognitive symptoms, including repeated questions wherein ‘truthful’responses cause distress. Carers face a dilemma, do they avoid, distract or ‘correct’ the person and tell the ‘truth’, or lie? This paper explores the concept of lying from the perspective of the carer and person with dementia. A descriptive qualitative methodology was used. Focus groups with a purposive sample of people with memory problems (n = 14) and carers (n = 18) were conducted. The results found that deliberate lying with the intention to deceive was deemed unacceptable by all. However, in certain circumstances telling a ‘good lie’ or ‘white lie’ was considered acceptable when the carer knew the person and the intention behind the ‘lie’ was to mitigate the distress of the person with dementia.

scholarly journals ‘All the world’s a stage’: Accounting for the dementia experience – insights from the IDEAL study

2019 ◽  
Vol 20 (5) ◽  
pp. 703-720
Author(s):  
Alexandra Hillman ◽  
Ian Rees Jones ◽  
Catherine Quinn ◽  
Sharon M Nelis ◽  
Ruth A Lamont ◽  
...  
Keyword(s):  
Qualitative Interviews ◽  
Cultural Meanings ◽  
Self Presentation ◽  
Social Conventions ◽  
People With Dementia ◽  
Dementia Research ◽  
Ideal Study ◽  
Interpretive Practices ◽  
Key Aspects ◽  
Person With Dementia

Qualitative dementia research emphasises the importance of recognising the voice of the person with dementia. However, research imbued with a politics of selfhood, whereby individuals are called upon to give coherence to experience and emotion, jars with representations of dementia as a gradual decline in capacity. Moreover, it reinforces an assumption that there is an essential experience that can be accessed through different methods. Drawing on Atkinson and Silverman, we view the interview not as confessional but rather as an outcome of social interaction. This paper draws on qualitative interviews from the Improving the Experince of Dementia and Enhancing Active Life (IDEAL) study, to focus specifically on the forms of accounting and storytelling of people living with dementia and how these are produced through the course of the interview encounter. Extracts from our interviews highlight key aspects of this interactional process: (a) social conventions and temporality, (b) self presentation and identity work, (c) accounts and wider cultural meanings. To conclude, we suggest that qualitative research with people with dementia requires a reframing of both the interview encounter and interpretive practices.

scholarly journals ‘Getting back to normality seems as big of a step as going into lockdown’: the impact of the COVID-19 pandemic on people with early to middle stage dementia

2021 ◽  
Author(s):  
Catherine V Talbot ◽  
Pam Briggs
Keyword(s):  
Well Being ◽  
Cognitive Stimulation ◽  
Social Worlds ◽  
Middle Stage ◽  
People With Dementia ◽  
The Social ◽  
Function Loss ◽  
The Government ◽  
Person With Dementia ◽  
The Impact

Abstract People with dementia can experience shrinkage of their social worlds, leading to a loss of independence, control and reduced well-being. We used ‘the shrinking world’ theory to examine how the COVID 19 pandemic has impacted the lives of people with early to middle stage dementia and what longer-term impacts may result. Interviews were conducted with 19 people with dementia and a thematic analysis generated five themes: the forgotten person with dementia, confusion over government guidance, deterioration of cognitive function, loss of meaning and social isolation, safety of the lockdown bubble. The findings suggest that the pandemic has accelerated the ‘shrinking world’ effect and created tension in how people with dementia perceive the outside world. Participants felt safe and secure in lockdown but also missed the social interaction, cognitive stimulation and meaningful activities that took place outdoors. As time in lockdown continued, these individuals experienced a loss of confidence and were anxious about their ability to re-engage in the everyday practises that allow them to participate in society. We recommend ways in which the government, communities and organisations might counteract some of the harms posed by this shrinking world.

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

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.

scholarly journals Wayfinding in People with Alzheimer’s Disease: Perspective Taking and Architectural Cognition—A Vision Paper on Future Dementia Care Research Opportunities

2021 ◽  
Vol 13 (3) ◽  
pp. 1084
Author(s):  
Saskia Kuliga ◽  
Martin Berwig ◽  
Martina Roes
Keyword(s):  
Perspective Taking ◽  
Spatial Orientation ◽  
Environmental Design ◽  
Spatial Disorientation ◽  
Planning And Design ◽  
People With Dementia ◽  
Starting Point ◽  
Planning Processes ◽  
Person With Dementia ◽  
Underlying Processes

Based on a targeted literature review, this vision paper emphasizes the importance of dementia-sensitive built space. The article specifically focuses on supporting spatial orientation and wayfinding for people living with dementia. First, we discuss types of wayfinding challenges, underlying processes, and consequences of spatial disorientation in the context of dementia of the Alzheimer’s type. Second, we focus on current efforts aimed at planning and evaluating dementia-sensitive built space, i.e., environmental design principles, interventions, evaluation tools, strategies, and planning processes. Third, we use our findings as a starting point for developing an interdisciplinary research vision aimed at encouraging further debates and research about: (1) the perspective of a person with dementia, specifically in the context of wayfinding and spatial orientation, and (2) how this perspective supplements planning and design processes of dementia-sensitive built space. We conclude that more closely considering the perspective of people with dementia supports the development of demographically sustainable future cities and care institutions.

scholarly journals Home care in dementia: The views of informal carers from a co-designed consultation

Dementia ◽  
2021 ◽  
pp. 147130122199050
Author(s):  
Elizabeth L Dalgarno ◽  
Vincent Gillan ◽  
Amy Roberts ◽  
Jean Tottie ◽  
David Britt ◽  
...  
Keyword(s):  
Home Care ◽  
Working Conditions ◽  
Public Involvement ◽  
Framework Analysis ◽  
Electronic Survey ◽  
The United Kingdom ◽  
People With Dementia ◽  
Dementia Research ◽  
Informal Carers ◽  
A Current

Background In the United Kingdom, there is a current priority for high-quality dementia care provided at home. However, home care or domiciliary care is an area where problems have been reported, in terms of a lack of consistency, coordination and appropriate responses to the specific needs of those with dementia. The views of informal carers, who often must respond to these problems when supporting relatives, are crucial in shedding light on the issues and in seeking to promote solutions. Methods This study explored the views of informal carers of those with dementia concerning home care, through a consultation using an electronic survey. The survey questions were designed by informal carers, through a public involvement group within an existing programme of dementia research. The survey elicited responses from 52 informal carers in 2017/18. The data were analysed qualitatively using framework analysis. Findings Carers’ views focused on the need for investment into meaningful personalisation, recognising the value of providing care and valuing formal carers, systemic failings of care coordination and provision and the importance of ongoing collaboration and care planning. Conclusion Based on a framework drawn from the views of informal carers themselves, this study articulated issues of concern for home care and its delivery for people with dementia. Attempts should be made to make dementia home care more consistently personalised, inclusive and collaborative with informal carers and key others involved. Further areas to explore include working conditions of formal carers and current models utilised in homecare provision.

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.

Quality in long-term care homes for people with dementia: an assessment of specialist provision

2006 ◽  
Vol 26 (4) ◽  
pp. 649-668 ◽  
Author(s):  
SIOBHAN REILLY ◽  
MICHELE ABENDSTERN ◽  
JANE HUGHES ◽  
DAVID CHALLIS ◽  
DAN VENABLES ◽  
...  
Keyword(s):  
Social Services ◽  
Research Evidence ◽  
Long Term Care ◽  
Term Care ◽  
North West ◽  
People With Dementia ◽  
National Service Framework ◽  
Specialist Services ◽  
Care Regimes

There has been debate for some years as to whether the best model of care for people with dementia emphasises specialist facilities or integrated service provision. Although the United Kingdom National Service Framework for Older People recommended that local authority social services departments encourage the development of specialist residential care for people with dementia, uncertainty continues as to the benefits of particular care regimes, partly because research evidence is limited. This paper examines a large number of ‘performance measures’ from long-term care facilities in North West England that have residents with dementia. Of the 287 in the survey, 56 per cent described themselves as specialist services for elderly people with mental ill-health problems (known familiarly as ‘EMI homes’). It was envisaged that EMI homes would score higher than non-EMI homes on several measures of service quality for people with dementia that were developed from research evidence and policy documents. The analysis, however, found that EMI homes performed better than non-EMI homes on only a few measures. While both home types achieved good results on some standards, on others both performed poorly. Overall, EMI and non-EMI homes offered a similar service.

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