Dementia: the International Journal of Social Research and Practice, 21(1), 2022, pp.94-113.
Publisher:
Sage
Background: Current policy emphasises the role of digital technologies in facilitating the management of long-term conditions. While digital resources have been developed for carers, there has been little attention to their development for people with dementia. The Caregivers pro-MMD website was developed as a joint resource for people with dementia and carers, delivering access to information...
(Edited publisher abstract)
Background: Current policy emphasises the role of digital technologies in facilitating the management of long-term conditions. While digital resources have been developed for carers, there has been little attention to their development for people with dementia. The Caregivers pro-MMD website was developed as a joint resource for people with dementia and carers, delivering access to information, informal content, games and peer support. Research Design and Methods: This study explored the experiences of dyads consisting of people with dementia and carers of using the website. Interviews and focus groups were conducted with 43 participants. Findings: Thematic analysis identified 10 subthemes grouped under three superordinate themes which highlight participants’ experiences of and responses to the website functions; important aspects of the website design and delivery; and barriers to use. Discussion: Findings highlight the value of a credible information source which negated the need for arduous online searches, the pleasure associated with playing games and interacting with others online. However, participants were reluctant to share personal information online, preferring to create ‘informal content’ which celebrated everyday life, and were reluctant to ‘friend’ people online who they had not met in person. The importance of training and support to use the website was highlighted. Health problems, lack of interest or difficulties using technology, and time were all identified as barriers to use.
(Edited publisher abstract)
Subject terms:
internet, dementia, carers, digital technology, qualitative research, peer support, information resources, user views, carer views, user participation;
Dementia: the International Journal of Social Research and Practice, 21(2), 2022, pp.489-502.
Publisher:
Sage
Objectives: Nostalgic memories are more social than other forms of autobiographical recall, often refer to atypical events, express more positive affect and reflect life as meaningful. Recalling a nostalgic (compared to ordinary) memory increases self-esteem, self-growth, meaning in life and social connectedness for people living with dementia. This study set two objectives: to work with people...
(Edited publisher abstract)
Objectives: Nostalgic memories are more social than other forms of autobiographical recall, often refer to atypical events, express more positive affect and reflect life as meaningful. Recalling a nostalgic (compared to ordinary) memory increases self-esteem, self-growth, meaning in life and social connectedness for people living with dementia. This study set two objectives: to work with people living with dementia to develop an intervention based on nostalgia, and to assess whether couples could engage in nostalgic conversations. Method: The research fell into three phases. First, people living with dementia and with carers were consulted to identify the parameters for a nostalgic intervention. Second, a workbook was drafted that contained triggers for nostalgic conversations, which the researchers then took back to the public contributors for refinement. Finally, the workbook was trialled over 5 weeks with six couples, each of which included a person living with dementia. The researchers assessed pre- and post-intervention self-esteem, self-growth, meaning in life and social connectedness for participants with dementia and social connectedness for carers. This study then calculated Reliable Change Index scores and established levels of clinically significant change. This study also interviewed couples at the end of the intervention to explore its implementation and acceptability. Results: All six couples could identify nostalgic memories, with five couples successfully integrating the nostalgic conversations into their day-to-day lives. A sixth couple found it difficult to engage fully with the intervention, but still considered it useful. All six couples manifested a reliable change in at least one outcome, with one couple showing reliable change across three outcomes. Conclusion: The psychological benefits of nostalgia have been robustly demonstrated in laboratory-based studies. This co-production of an intervention that sets nostalgic recall into the context of a conversation has clinical potential but requires further investigation through a larger study.
(Edited publisher abstract)
Subject terms:
dementia, reminiscence therapy, co-production, intervention, self-esteem, social networks, life story work, partners, user participation;
Dementia: the International Journal of Social Research and Practice, 21(2), 2022, pp.426-441.
Publisher:
Sage
Background and objectives: this study engaged people living with dementia, family carers and health and social care professionals in co-designing two dementia care interventions: for family carers and people living with dementia (New Interventions for Independence in Dementia Study (NIDUS)-family and home-care workers (NIDUS-professional training programme). Research design and methods: Over...
(Edited publisher abstract)
Background and objectives: this study engaged people living with dementia, family carers and health and social care professionals in co-designing two dementia care interventions: for family carers and people living with dementia (New Interventions for Independence in Dementia Study (NIDUS)-family and home-care workers (NIDUS-professional training programme). Research design and methods: Over October 2019-March 2020, public and patient (PPI) and professional members of the NIDUS co-design groups were invited to complete the PPI Engagement Evaluation Tool (designed to assess engagement activities), and non-professional PPI members were invited to participate in qualitative telephone interviews. The researchers thematically analysed and integrated mixed-methods findings. Results: Most (15/20; 75%) of the PPI members approached participated. Four themes were identified: (1) Creating the right atmosphere: participants found group meetings positive and enabling, though one health professional was unsure how to position themselves within them; (2) Participants influencing the outcome: while most members felt that they had some influence, for one carer consultation seemed too late to influence; (3) Having the right information: several carers wanted greater clarity and more regular updates from researchers; (4) Unique challenges for people living with dementia: memory problems presented challenges in engaging with substantial information, and within a large group. Discussion and implications: This paper reflects on the importance of providing accessible, regular updates, managing power imbalances between co-design group members with lived and professional experiences; and ensuring needs and voices of people living with dementia are prioritised. The researchers encourage future studies to incorporate evaluations of co-design processes into study design.
(Edited publisher abstract)
Subject terms:
co-production, user participation, dementia, complex needs, intervention, service development, service users, user views;
Dementia: the International Journal of Social Research and Practice, 21(2), 2022, pp.556-578.
Publisher:
Sage
Earlier diagnosis and longer working careers is resulting in more individuals being identified as having Mild Cognitive Impairment or Early Onset Dementia (MCI/EOD) when they are still in the workforce. While there is growing interest in the dementia research community and beyond to develop technologies to support people with dementia, the use of technology for and by people with MCI/EOD...
(Edited publisher abstract)
Earlier diagnosis and longer working careers is resulting in more individuals being identified as having Mild Cognitive Impairment or Early Onset Dementia (MCI/EOD) when they are still in the workforce. While there is growing interest in the dementia research community and beyond to develop technologies to support people with dementia, the use of technology for and by people with MCI/EOD in the workplace has had very little attention. This paper presents a two-part study involving interviews and participatory sessions to begin to understand the workplace experiences and the role of technology among people living with MCI/EOD. This paper presents the findings from working with seven people with MCI/EOD and two care partners to explore technology design. The results indicate several similarities as well as a few differences between MCI/EOD and later-onset dementia with respect to challenges using technology and design considerations for supporting engagement and use of technology. Lessons learned through the process of working with people with MCI/EOD through participatory methods is presented along with recommendations to foster an inclusive, respectful, and empowering experience for participants with MCI/EOD.
(Edited publisher abstract)
Subject terms:
social inclusion, digital technology, cognitive impairment, dementia, user participation, young onset dementia, telecare, service development;
Dementia: the International Journal of Social Research and Practice, 21(2), 2022, pp.618-647.
Publisher:
Sage
There is a wealth of literature investigating the role of family involvement within care homes following placement of a relative with dementia. This review summarises how family involvement is measured and aims to address two questions: (1) which interventions concerning family involvement have been evaluated? And (2) does family involvement within care homes have a positive effect...
(Edited publisher abstract)
There is a wealth of literature investigating the role of family involvement within care homes following placement of a relative with dementia. This review summarises how family involvement is measured and aims to address two questions: (1) which interventions concerning family involvement have been evaluated? And (2) does family involvement within care homes have a positive effect on a resident’s quality of life and behavioural and psychological symptoms of dementia? After searching and screening on the three major databases PsycINFO, MEDLINE and CINAHL Plus for papers published between January 2005 and May 2021, 22 papers were included for synthesis and appraisal due to their relevance to family involvement interventions and or family involvement with resident outcomes. Results show that in 11 interventions designed to enhance at least one type of family involvement, most found positive changes in communication and family–staff relationships. Improvement in resident behavioural and psychological symptoms of dementia was reported in two randomised controlled trials promoting partnership. Visit frequency was associated with a reduction of behavioural and psychological symptoms of dementia for residents with moderate dementia. Family involvement was related to positive quality of life benefits for residents. Contrasting results and methodological weaknesses in some studies made definitive conclusions difficult. Few interventions to specifically promote family involvement within care homes following placement of a relative with dementia have been evaluated. Many proposals for further research made over a decade ago by Gaugler (2005) have yet to be extensively pursued. Uncertainty remains about how best to facilitate an optimum level and type of family involvement to ensure significant quality of life and behavioural and psychological symptoms of dementia benefits for residents with dementia.
(Edited publisher abstract)
Subject terms:
dementia, systematic reviews, intervention, care homes, user participation, participation, outcomes, quality of life, nursing homes, family relations;
Objectives: The Helping Invested Families Improve Veterans’ Experiences Study (HI-FIVES) evaluated a skills training program to support family caregivers of cognitively or functionally impaired persons. HI-FIVES demonstrated sustained improvements in caregivers’ and patients’ experiences of VA care. The aim of this distinct, secondary qualitative study was to explore the potential processes related to the individual tailored skills-based telephone training underpinning HI-FIVES intervention effects. This study explored topics caregivers selected, characteristics of action items created, patterns of action or inaction, and barriers to action item completion across topics. Methods: Qualitative data was analysed from 118 dyads randomized into the HI-FIVES intervention which included three weekly facilitated training calls covering five education topics and action items developed by caregivers for each topic. Qualitative analysis of text responses to questions from the training calls was used. Results: Three of the top four most selected topics were caregiver-oriented and caregivers created an action item most often for self-care topics. Caregiver-oriented topics also had the highest action item completion rates. The majority of action items created met SMART guidelines for goal setting and simple structure. With regard to barriers to action item completion, caregivers commonly reported still contemplating/pending. Conclusion: the findings identify motivational interviewing as an effective technique to identify critical intervention content and address barriers to achieving caregiving goals. This study suggests that caregivers felt more empowered to create and complete an action item when they had more control over completing the action item, such as in topics related to their own self-care.
(Edited publisher abstract)
Objectives: The Helping Invested Families Improve Veterans’ Experiences Study (HI-FIVES) evaluated a skills training program to support family caregivers of cognitively or functionally impaired persons. HI-FIVES demonstrated sustained improvements in caregivers’ and patients’ experiences of VA care. The aim of this distinct, secondary qualitative study was to explore the potential processes related to the individual tailored skills-based telephone training underpinning HI-FIVES intervention effects. This study explored topics caregivers selected, characteristics of action items created, patterns of action or inaction, and barriers to action item completion across topics. Methods: Qualitative data was analysed from 118 dyads randomized into the HI-FIVES intervention which included three weekly facilitated training calls covering five education topics and action items developed by caregivers for each topic. Qualitative analysis of text responses to questions from the training calls was used. Results: Three of the top four most selected topics were caregiver-oriented and caregivers created an action item most often for self-care topics. Caregiver-oriented topics also had the highest action item completion rates. The majority of action items created met SMART guidelines for goal setting and simple structure. With regard to barriers to action item completion, caregivers commonly reported still contemplating/pending. Conclusion: the findings identify motivational interviewing as an effective technique to identify critical intervention content and address barriers to achieving caregiving goals. This study suggests that caregivers felt more empowered to create and complete an action item when they had more control over completing the action item, such as in topics related to their own self-care.
(Edited publisher abstract)
N = 7,331) were older persons (71%), caregivers of older persons with dementia/cognitive impairment (23%), and older persons with dementia/cognitive impairment (6%). Synthesis identified 2 themes: willingness to participate and decision-making approaches. Discussion and Implications: Research participation by older persons with dementia may be optimized through reducing risks and burdens...
(Edited publisher abstract)
Background and Objectives: Human research ethics statements support the equitable inclusion of diverse groups. Yet older people are underrepresented in clinical research, especially those with impaired decision-making capacity. The aim of this study was to identify the perspectives and experiences of older persons and their caregivers of research participation with impaired decision-making capacity. Research Design and Methods: Scoping review of the literature and online sources in January-February 2019 (updated June 2020) according to Joanna Briggs Institute methodology and PRISMA Extension for Scoping Reviews. English-language peer-reviewed research articles and Australian online narratives were included. Data were tabulated and narratively synthesized. Results: From 4,171 database records and 93 online resources, 22 articles (2000-2019, 82% United States, 16 first authors) and one YouTube webinar (2018) were initially included; updated searches yielded an additional article (2020) and YouTube webinar (2020). Studies were heterogeneous in terminology, methods, and foci, with hypothetical scenarios, quantitative analyses, and examination of proxy consent predominating. Participants (N = 7,331) were older persons (71%), caregivers of older persons with dementia/cognitive impairment (23%), and older persons with dementia/cognitive impairment (6%). Synthesis identified 2 themes: willingness to participate and decision-making approaches. Discussion and Implications: Research participation by older persons with dementia may be optimized through reducing risks and burdens and increasing benefits for participants, greater consumer input into study development, and shared and supported decision-making. Older persons' and caregivers' perspectives and experiences of research participation with impaired decision-making capacity require investigation in a greater range of countries and conditions other than dementia, and dissemination through more varied media.
(Edited publisher abstract)
Subject terms:
older people, carers, decision making, literature reviews, user views, participatory research, cognitive impairment, research ethics, dementia, user participation;
Health Expectations, 25(1), 2022, pp.80-90. Online only
Publisher:
Wiley
Background: Researchers often stress the necessity and challenge of integrating the positionings of residents, family members and nurses in order to realize each actor's involvement in long-term dementia care. Yet most studies approach user and family involvement separately. Aim: To explain how productive involvement in care provision is accomplished in triadic relationships between residents
(Edited publisher abstract)
Background: Researchers often stress the necessity and challenge of integrating the positionings of residents, family members and nurses in order to realize each actor's involvement in long-term dementia care. Yet most studies approach user and family involvement separately. Aim: To explain how productive involvement in care provision is accomplished in triadic relationships between residents, family members and nurses. Methods: An ethnographic study of identity work, conducted between 2014 and 2016 in a Dutch nursing home. Findings: this study identify four ideal-typical identity positionings performed by nurses through daily activities. The findings reveal how their identity positionings were inseparable from those of the residents and family members as they formed triads. Congruent, or 'matching', identity positionings set the stage for productive involvement. This systematic analysis of participants' identity work shows how-through embedded rights and responsibilities-their positionings inherently shaped and formed the triadic types and degrees of involvement observed within these relationships. Discussion and conclusion: This study both unravels and juxtaposes the interrelatedness of, and differences between, the concepts of user and family involvement. Accordingly, these findings display how residents, family members and nurses-while continuously entangled in triadic relationships-can use their identity positionings to accomplish a variety of involvement activities. To mirror and optimize the implementation of user and family involvement, this paper proposes a rights-based and relational framework based on these findings. Patient or public contribution: Conversations with and observations of residents; feedback session with the Clients' Council.
(Edited publisher abstract)
Subject terms:
dementia, family members, long term care, nursing homes, residents, nurses, staff-user relationships, user participation;
Health and Social Care in the Community, 30(3), 2022, pp.908-917.
Publisher:
Wiley
Engaging stakeholders in health-related research is becoming commonplace internationally and is increasingly considered best research practice to improve care management services. Many different groups have a stake in dementia care, but the evidence base for stakeholder involvement in dementia research is still small. The aim of this study was to explore views of two major stakeholder groups...
(Edited publisher abstract)
Engaging stakeholders in health-related research is becoming commonplace internationally and is increasingly considered best research practice to improve care management services. Many different groups have a stake in dementia care, but the evidence base for stakeholder involvement in dementia research is still small. The aim of this study was to explore views of two major stakeholder groups of dementia care in research priority setting and how they would want to be involved in dementia research. Group discussions were carried out with 47 participants divided into two groups: (a) healthy senior citizens and (b) providers of dementia care. Ensuing responses were analysed using descriptive content analysis. The main research interest of both groups was similar, but senior citizens and providers of dementia care varied in how they perceived the roles of researchers and stakeholders involved. Groups also differed with respect to the amount of time they would be willing to invest into research. The results contribute to our knowledge of group-specific stakeholder priorities and attitudes regarding participatory involvement in dementia research.
(Edited publisher abstract)
Subject terms:
user views, dementia, user participation, research, older people, informal care, carer views, participatory research;
Health and Social Care in the Community, 30(4), 2022, pp.e1375-e1383.
Publisher:
Wiley
Those diagnosed with dementia and those who provide care and support often feel socially isolated with limited opportunities for social engagement, increasing the potential for loneliness and further isolation that is detrimental to social health. This study examined how a co-designed dementia café impacted on the self-reported social health of community dwelling people with dementia...
(Edited publisher abstract)
Those diagnosed with dementia and those who provide care and support often feel socially isolated with limited opportunities for social engagement, increasing the potential for loneliness and further isolation that is detrimental to social health. This study examined how a co-designed dementia café impacted on the self-reported social health of community dwelling people with dementia and their care partners in the North-West of England. Semi-structured interviews were conducted at two time periods (summer of 2019 and spring of 2020), with five people living with dementia and eight care partners. The key finding was that participating in the cafés led to a sense of belonging and purpose that was beneficial to well-being and social health for all participants. Community-based initiatives that provide opportunities for peer support for the person with the diagnosis and the care partner are essential so that people living with dementia may rebuild their confidence as well as retaining opportunities to socialise.
(Edited publisher abstract)
Subject terms:
carer views, dementia, co-production, user views, user participation, social isolation, wellbeing, evaluation, peer support;