scholarly journals Informal caregivers and psychosocial support: Analysis of European Dementia Policy documents

2021 ◽  
Author(s):  
Miroslava Tokovska ◽  
Magde Mohamed Nour ◽  
Anette Sørensen ◽  
Ursula Småland Goth
Keyword(s):  
Psychosocial Support ◽  
Qualitative Content Analysis ◽  
Informal Caregivers ◽  
Psychosocial Interventions ◽  
Social Psychological ◽  
The United Kingdom ◽  
Coding Systems ◽  
People With Dementia ◽  
Individual Family ◽  
The Individual

Various countries in Europe have different strategies for promoting care solutions for dementia challenges. The different approaches of Austria, Belgium, Czechia, Denmark, Finland, Germany, Gibraltar, Ireland, Israel, Malta, Nederland, Norway, Sweden and the United Kingdom (Scotland and Wales) were investigated. Dementia has a significant social, psychological and economic impact on the individual, family and society.  As the disease progresses dementia sufferers become increasingly dependent. As many dementia sufferers are at home during the initial stages, the physical, emotional, and social demands of the dementia sufferers are often covered by informal caregivers. This study, therefore, aims to investigate the integration of psychosocial interventions for comprehensive care pertaining to informal caregivers of people with dementia in Europe. Furthermore, the study will highlight how implementation of technologies might enable psychosocial support of informal caregivers. The data is based on 15 national dementia strategies from various European countries. Data was based on preexisting coding systems with the predefined keywords and analyzed by qualitative content analysis by four of the authors. Our results show that psychosocial support is provided in various modalities and that informal caregivers need to be supported by a psychosocial approach. Due to this need the national dementia strategies should include measures to reduce the emotional burden of informal caregivers. Psychosocial support provided to informal caregivers in a comprehensive and systematic way is likely to enable informal caregivers to handle the emotional, cognitive, and behavioral consequences of the disease and its treatment, while helping to maintain their work-life balance.

scholarly journals Updated meta-review of evidence on support for carers

2018 ◽  
Vol 23 (3) ◽  
pp. 196-207 ◽  
Author(s):  
Jane Dalton ◽  
Sian Thomas ◽  
Melissa Harden ◽  
Alison Eastwood ◽  
Gillian Parker
Keyword(s):  
Mental Health ◽  
Systematic Reviews ◽  
Mental Health Problems ◽  
Psychosocial Support ◽  
Psychosocial Interventions ◽  
Negative Effects ◽  
High Quality ◽  
People With Dementia ◽  
Meta Review

Objective To update a 2010 meta-review of systematic reviews of effective interventions to support carers of ill, disabled, or older adults. In this article, we report the most promising interventions based on the best available evidence. Methods Rapid meta-review of systematic reviews published from January 2009 to 2016. Results Sixty-one systematic reviews were included (27 high quality, 25 medium quality, and nine low quality). The quality of reviews has improved since the original review, but primary studies remain limited in quality and quantity. Fourteen high quality reviews focused on carers of people with dementia, four on carers of those with cancer, four on carers of people with stroke, three on carers of those at the end of life with various conditions, and two on carers of people with mental health problems. Multicomponent interventions featured prominently, emphasizing psychosocial or psychoeducational content, education and training. Improved outcomes for carers were reported for mental health, burden and stress, and wellbeing or quality of life. Negative effects were reported in reviews of respite care. As with earlier work, we found little robust evidence on the cost-effectiveness of reviewed interventions. Conclusions There is no ‘one size fits all’ intervention to support carers. There is potential for effective support in specific groups of carers, such as shared learning, cognitive reframing, meditation, and computer-delivered psychosocial support for carers of people with dementia. For carers of people with cancer, effective support may include psychosocial interventions, art therapy, and counselling. Carers of people with stroke may also benefit from counselling. More good quality, theory-based, primary research is needed.

Non-pharmacological interventions in care homes, with particular emphasis on the treatment of people with dementia

2020 ◽  
pp. 265-280
Author(s):  
Ian A. James ◽  
Alan Howarth
Keyword(s):  
Psychosocial Interventions ◽  
Care Homes ◽  
Future Research ◽  
Pharmacological Interventions ◽  
Cognitive Health ◽  
Care Plans ◽  
People With Dementia ◽  
The Individual ◽  
The Uk ◽  
Preventative Interventions

In the UK there are over 22,000 care homes, largely run by the private and charitable sectors, caring for 416,000 people. The residents in care homes present with a range of needs linked to physical health, cognitive health, and mental health. A large proportion of residents in care homes have dementia and many of them exhibit Behaviours that Challenge (BtC). This chapter focuses on the non-pharmacological interventions available in care homes to help treat BtC that occur in the context of dementia. It discusses preventative interventions designed to promote the wellbeing of people with dementia, and reviews the evidence. Formulation-led interventions identify the needs of the individual and lead to the development of person-centred care plans and the evidence strongly supports that these are needed to deliver effective psychosocial interventions in care homes. Finally, the chapter discusses the implications for future research.

Keeping the person with dementia and the informal caregiver together: a systematic review of psychosocial interventions

2016 ◽  
Vol 29 (4) ◽  
pp. 583-593 ◽  
Author(s):  
Annemarie Rausch ◽  
Monique A. A. Caljouw ◽  
Eva S. van der Ploeg
Keyword(s):  
Social Factors ◽  
Informal Caregiver ◽  
Informal Caregivers ◽  
Psychosocial Interventions ◽  
Skills Training ◽  
Narrative Synthesis ◽  
People With Dementia ◽  
Person With Dementia ◽  
Support Relationships ◽  
The Relationship

ABSTRACTBackground:Social support, relationships, and closeness are emphasized as important by both people with dementia and their informal caregivers. Psychosocial interventions might be helpful to reinforce the relationship between a person with dementia and his or her informal caregiver. Therefore, this review explores what types of psychosocial interventions have been provided for people with dementia and their informal caregivers together, and the effectiveness of these interventions.Methods:PubMed, PsychInfo, Cinahl, and references of key papers were searched for studies describing a psychosocial intervention for people with dementia and their informal caregivers together. Psychosocial interventions were defined as focusing primarily on psychological or social factors.Results:A total of seven publications describing six studies were identified as eligible for inclusion in this review. Interventions ranged in focus from skills training to viewing/making art. The methodology of the studies varied, especially regarding the outcome measures used. The results of individual studies were mixed. A narrative synthesis of the included studies is given.Conclusion:Although caregiving dyads emphasize the importance of their relationship, this is mostly not taken into consideration in the design and effect evaluations of the interventions. Improved research is needed on this subject, which focuses on people with dementia living in the community and those living in nursing homes.

scholarly journals Facilitators and barriers to adaptive implementation of the Meeting Centers Support Program (MCSP) in three European countries; the process evaluation within the MEETINGDEM study

2017 ◽  
Vol 30 (4) ◽  
pp. 527-537 ◽  
Author(s):  
L.D. Van Mierlo ◽  
R. Chattat ◽  
S. Evans ◽  
D. Brooker ◽  
F.L. Saibene ◽  
...  
Keyword(s):  
Psychosocial Support ◽  
Informal Caregivers ◽  
European Countries ◽  
Support Program ◽  
Collaboration Network ◽  
Dissemination And Implementation ◽  
People With Dementia ◽  
National Organizations ◽  
Facilitators And Barriers ◽  
Country Specific

ABSTRACTBackground:In the MEETINGDEM project, the Meeting Centers Support Program (MCSP) was adaptively implemented and evaluated in three European countries: Italy, Poland, and the United Kingdom. The aim of this study was to investigate overall and country-specific facilitators and barriers to the implementation of MCSP in these European countries.Methods:A qualitative multiple case study design was used. Based on the theoretical model of adaptive implementation, a checklist was composed of potential facilitators and barriers to the implementation of MCSP. This checklist was administered among stakeholders involved in the implementation of MCSP to trace the experienced facilitators and barriers. Twenty-eight checklists were completed.Results:Main similarities between countries were related to the presence of suitable staff, management, and a project manager, and the fact that the MCSP is attuned to needs and wishes of people with dementia and informal caregivers. Main differences between countries were related to: communication with potential referrers, setting up an inter-organizational collaboration network, receiving support of national organizations, having clear discharge criteria for the MCSP and continuous PR in the region.Conclusion:The results of this study provide insight into generic and country specific factors that can influence the implementation of MCSP in different European countries. This study informs further implementation and dissemination of MCSP in Europe and may also serve as an example for the dissemination and implementation of other effective psychosocial support interventions for people with dementia and their informal caregivers across and beyond Europe.

scholarly journals I-CARE—An Interaction System for the Individual Activation of People with Dementia

Geriatrics ◽  
2021 ◽  
Vol 6 (2) ◽  
pp. 51
Author(s):  
Tanja Schultz ◽  
Felix Putze ◽  
Lars Steinert ◽  
Ralf Mikut ◽  
Anamaria Depner ◽  
...  
Keyword(s):  
Recommendation System ◽  
Ad Hoc ◽  
Informal Caregivers ◽  
User Interactions ◽  
Spontaneous Formation ◽  
Current State ◽  
People With Dementia ◽  
The Social ◽  
Activation System ◽  
The Individual

I-CARE is a hand-held activation system that allows professional and informal caregivers to cognitively and socially activate people with dementia in joint activation sessions without special training or expertise. I-CARE consists of an easy-to-use tablet application that presents activation content and a server-based backend system that securely manages the contents and events of activation sessions. It tracks various sources of explicit and implicit feedback from user interactions and different sensors to estimate which content is successful in activating individual users. Over the course of use, I-CARE’s recommendation system learns about the individual needs and resources of its users and automatically personalizes the activation content. In addition, information about past sessions can be retrieved such that activations seamlessly build on previous sessions while eligible stakeholders are informed about the current state of care and daily form of their protegees. In addition, caregivers can connect with supervisors and professionals through the I-CARE remote calling feature, to get activation sessions tracked in real time via audio and video support. In this way, I-CARE provides technical support for a decentralized and spontaneous formation of ad hoc activation groups and fosters tight engagement of the social network and caring community. By these means, I-CARE promotes new care infrastructures in the community and the neighborhood as well as relieves professional and informal caregivers.

scholarly journals The COVID-19 pandemic as experienced by the spouses of home-dwelling people with dementia – a qualitative study

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Anne Marie Mork Rokstad ◽  
Janne Røsvik ◽  
Marit Fossberg ◽  
Siren Eriksen
Keyword(s):  
Qualitative Content Analysis ◽  
Psychosocial Interventions ◽  
Well Being ◽  
Total Sample ◽  
Vulnerable Groups ◽  
Telephone Interviews ◽  
People With Dementia ◽  
Qualitative Descriptive ◽  
Restrictive Measures ◽  
Health And Well Being

Abstract Background Worldwide, restrictive measures have been taken to manage the spread of the COVID-19 pandemic. Social distancing and self-isolation have considerably affected the lives of people with dementia and their informal caregivers. The purpose of the study was to explore the consequences of the COVID-19 pandemic as experienced by the spouses of home-dwelling people with dementia in Norway. Methods The study had a qualitative descriptive design using individual telephone interviews for data collection. A total sample of 17 spouses of people with dementia were included, 14 women and three men ages 52 to 82 years. A qualitative content analysis following six steps inspired by Graneheim and Lundman was used to identify the categories presented. Results The participants emphasized four main perspectives: 1) Radical changes in available services, 2) Restrictions changed everyday life, 3) Impacts on health and well-being, and 4) Actions that made life easier. The participants also described how positive activities and easily accessible services helped them in this situation. Conclusions The governmental restrictions of the COVID-19 pandemic resulted in radical changes in available services with severe consequences for the lives and well-being of home-dwelling people with dementia and their spouses. Examples of coping strategies and possible psychosocial interventions compatible with virus precautions were identified. The potential of such interventions should be further explored to meet the needs of vulnerable groups in situations like a pandemic.

scholarly journals The Conceptual Framework of Harmful Gambling: A revised framework for understanding gambling harm

2020 ◽  
Vol 9 (2) ◽  
pp. 190-205 ◽  
Author(s):  
Margo Hilbrecht ◽  
David Baxter ◽  
Max Abbott ◽  
Per Binde ◽  
Luke Clark ◽  
...  
Keyword(s):  
Conceptual Framework ◽  
Review Article ◽  
Social Psychological ◽  
Multiple Stakeholders ◽  
Collaborative Process ◽  
Environment Exposure ◽  
Individual Family ◽  
The Individual ◽  
Framework Development ◽  
Related Harm

AbstractBackground and aimsThe Conceptual Framework of Harmful Gambling moves beyond a symptoms-based view of harm and addresses a broad set of factors related to the risks and effects of gambling harmfully at the individual, family, and community levels. Coauthored by international research experts and informed by multiple stakeholders, Gambling Research Exchange (GREO) facilitated the framework development in 2013 and retains responsibility for regular updates and mobilization. This review article presents information about the revised version of the Conceptual Framework of Harmful Gambling completed in late 2018.MethodsWe describe eight interrelated factors depicted in the framework that represent major themes in gambling ranging from the specific (gambling environment, exposure, gambling types, and treatment resources) to the general (cultural, social, psychological, and biological influences). After outlining the framework development and collaborative process, we highlight new topics for the recent update that reflect changes in the gambling landscape and prominent discourses in the scientific community. Some of these topics include social and economic impacts of gambling, and a new model of understanding gambling related harm.Discussion and conclusionsWe address the relevance of the CFHG to the gambling and behavioral addictions research community. Harm-based frameworks have been undertaken in other areas of addiction that can both inform and be informed by a model dedicated to harmful gambling. Further, the framework brings a multi-disciplinary perspective to bear on antecedents and factors that co-occur with harmful gambling.

scholarly journals 473 - Post-diagnostic Dyadic Intervention for People with Dementia and their Family Carers

2020 ◽  
Vol 32 (S1) ◽  
pp. 195-195
Author(s):  
Marleen Prins ◽  
Elsemieke van Belzen ◽  
Henriëtte van der Roest
Keyword(s):  
Psychosocial Support ◽  
Early Stage ◽  
Psychosocial Interventions ◽  
Emotional Impact ◽  
Family Carer ◽  
Family Carers ◽  
People With Dementia ◽  
The Family ◽  
The Future ◽  
Person With Dementia

Background and objectives Support directly after the diagnosis is often experiences as inadequate by people with dementia and their family carers. In this phase, appropriate psychosocial support is important to adapt to and cope with the dementia diagnosis. Often, available support is focused on practical matters and not on the emotional impact of the diagnosis. Also, very often problems have already started to accumulate before support is provided. In the US, the intervention SHARE [Support, Health, Activities, Resources, Education] was therefore developed and studied. This intervention is innovative, because it is designed for dyads (e.g., the person with dementia and their family carer) dealing with early-stage dementia. Its’ primary goal is to enhance communication between people with dementia and their family carers and to prepare them for the future. Several years ago, the intervention was adjusted and pilot -tested in the Netherlands, with positive results. This RCT study evaluates the (cost-)effectiveness of the Dutch SHARE intervention.Methods During four or five session and a pre-session, a healthcare psychologist carries out the intervention with dyads dealing with early-stage dementia. This to enhance skills of the dyad to cope with changes and stressors that might be expected in the future due to the dementia. The intervention takes place in an early stage when the person with dementia is still able to participate actively and before the family carer is overwhelmed by care-related stress. The primary outcome measurements are the quality of life of the person with dementia and self-efficacy of the family carer. Secondary outcomes are stress, communication in the relationship and perspective taking measured only for family carers. The design and procedures of the RCT will be presented in this session as well as the content of the intervention and demographic characteristics of participating dyads.Conclusion This intervention increases the ability of the dyad to cope with the disease and capacity to deal with the situation, with positive experiences of participating dyads and professionals. The study enhances knowledge about psychosocial interventions for people with dementia and family carer

How do activating interventions fit the personal needs, characteristics and preferences of people with dementia living in the community and their informal caregivers?

Dementia ◽  
2016 ◽  
Vol 18 (1) ◽  
pp. 157-177 ◽  
Author(s):  
Netta Van’t Leven ◽  
Jacomine de Lange ◽  
Anna-Eva Prick ◽  
Anne Margriet Pot
Keyword(s):  
Occupational Therapy ◽  
Daily Life ◽  
Early Stage ◽  
Comparative Method ◽  
Informal Caregivers ◽  
Psychosocial Interventions ◽  
Structured Interviews ◽  
Support Intervention ◽  
People With Dementia ◽  
Pleasant Events

Psychosocial interventions aim to mitigate the serious consequences of dementia for the daily life of people with dementia and their informal caregivers. To deliver a person-centred approach, it is crucial to take needs, characteristics and preferences of people with dementia and their informal caregivers into account. However, these factors are generally not systematically checked in order to determine which intervention will be most appropriate. Additionally, little is known about which intervention suits which needs, characteristics and preferences. Therefore, this study examined how three multiple-component, activating dyadic interventions fitted needs, characteristics, and preferences of both the people with dementia and their informal caregivers: the Pleasant Events Program, the Exercise and Support Intervention for People with Dementia and Their Caregivers, and Occupational Therapy. Semi-structured interviews were held with participants in either one of the interventions, 34 dyads and 19 professionals. The constant comparative method was used for the analysis. Five factors influenced the dyad’s ‘fit’: timing, need for activity, lifestyle, apart-or-together and meaning of (lost) activity. The factors ‘timing’ and a ‘need for activity’ were conditional for these activating interventions. Dyads in an early stage of dementia, who were aware of the effects on daily life, were open to a change in routine, and had a need to maintain activities profited from these interventions. Three distinctive factors were important for the fit of one of the three interventions in particular: ‘lifestyle’, ‘apart or together’ and ‘meaning of (lost) activity’. The Pleasant Events Programme and the Exercise and Support intervention properly addressed the need for activities that afforded daily pastimes or structure. The Exercise and Support Intervention addressed the need for physical activity and emphasized shared activity. Occupational Therapy properly addressed the need for self-sufficiency, maintaining activities and adjustment to physical limitations. These factors can contribute to a more person-centred application of the interventions.

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