Exploring the interplay between dementia, multiple health conditions and couplehood: A qualitative evidence review and meta-ethnography.

Background: On average, people with dementia live with 4.6 additional health conditions. Additionally, two thirds of carers of people with dementia are spouses, and are also likely to live with multimorbidity, given that older age is strongly associated with an increase in health conditions. Consequently, living with dementia and multimorbidity is often a shared experienced as a couple. However, research has not explored how living with both dementia and multimorbidity may impact on couplehood. Method: We conducted a qualitive evidence review using a meta-ethnographic approach, to answer the following question: In what way (if any) does living with dementia and multimorbidity impact on couplehood? No papers were found on couplehood, dementia and multimorbidity, therefore the review consists of a meta-synthesis of couples' experiences of living with dementia in relation to couplehood, with an additional search for any data related to health within the qualitative findings. Findings: Two major reciprocal themes and five subthemes were identified from the 14 study findings. 1. Change and adjustment in the relationship, which included themes around a sense of 'togetherness', change in roles and identity and developing shared coping strategies and 2. Commitment, which was encapsulated by themes on unconditional love and commitment to wedding vows. Health-related findings were limited but included the impact on emotional wellbeing and how other health conditions, rather than dementia, were attributed to a loss in physical sexual intimacy. Conclusion: This review found that couplehood was threatened when dementia symptoms progressed and couples experienced feelings of loss of independence and identity. However, a strong foundation of commitment, love and loyalty to each other developed over the course of the relationship, was the 'glue' that helped couples face dementia together. However, further research is needed to explore couples' experiences of living with both multimorbidity and dementia in relation to couplehood in order to develop holistic, relationship-centred interventions.

Conceptualising comorbidity and multimorbidity in dementia: A scoping review and syndemic framework.

Background: Older people and people with dementia experience a high prevalence of multiple health conditions. The terms 'comorbidity' and 'multimorbidity' are often used interchangeably to describe this, however there are key conceptual differences between these terms and their definitions. This has led to issues in the validity and comparability of research findings, potentially inappropriate intervention development and differences in quality of health care. Objective: To review how the terms 'comorbidity' and 'multimorbidity' are defined within peer-reviewed dementia research and propose an operational framework. Design: A scoping review of definitions within dementia research was carried out. Searches took place across five databases: Academic Search Premier, CINAHL Complete, MEDLINE, PsycARTICLES and PsycINFO. PRISMA-ScR guidelines were followed. Results: Content analysis revealed five key themes, showing significant overlap and inconsistencies from both within, and between, the comorbidity and multimorbidity definitions; 1. Number of conditions; 2. Type of health conditions; 3. The co-occurrence of conditions; 4. The inclusion of an index disease (or not); 5. Use of medical language. The analysis also revealed gaps in how the underlying concepts of the definitions relate to people with dementia living with multiple health conditions. Conclusion: This scoping review found that current definitions of comorbidity and multimorbidity are heterogeneous, reductionist and disease-focussed. Recommendations are made on the design of research studies including transparency and consistency of any terms and definitions used. A syndemic framework could be a useful tool for researchers, clinicians and policy makers to consider a more holistic picture of a person with dementia's health and wellbeing.

Family carer perspectives on the language of behaviour change in dementia: an online mixed methods survey.

OBJECTIVE: following the #BanBPSD campaign there has been critical interest in common terminology used for 'changes in behaviour' associated with dementia. However, commentaries and emerging studies have not fully considered family carer perspectives. This study explores the views of family carers on terminology and language for this paradigm. METHOD: a mixed methods online survey was conducted with family carers. Language preferences were scoped and examined with supporting open-ended questions that explored the reasons for choices. RESULTS: about 229 family carers completed the survey. Terms such as Challenging Behaviour, Behaviour that Challenges and Behavioural and Psychological Symptoms of dementia were mostly disliked. The most preferred term was a new concept called 'Behavioural and Emotional Expressions of Need' that few people had previously heard of. Overall, carers preferred positively construed, easily understood, person-centred terms that attributed changes in behaviour to unmet need, which also acknowledged the carer's role in management. CONCLUSIONS: given that carers are often the agents of change for this paradigm-where they may also be called on to act as proxy decision makers, it is important that professionals take time to explore their understandings and give due consideration to the language used when offering tailored interventions. These findings suggest that frequently used terms for changes in behaviour associated with dementia, such as Challenging Behaviour, BtC and BPSD, should be avoided.

The use of a bespoke website developed for people with dementia and carers: Users' experiences, perceptions and support needs.

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 Caregiverspro-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.

The language of behaviour changes in dementia: A mixed methods survey exploring the perspectives of people with dementia.

AIMS: The aim of this study was to explore the opinions of people with dementia, about the language used to describe changes in behaviour associated with dementia. DESIGN: This study adopted a human rights approach in a mixed methods convergent parallel synthesis design. METHODS: Online and paper-based questionnaire data were collected between November 2019 and March 2020. A combination of convenience and purposive sampling was used to invite people with dementia to participate. RESULTS: In total, 54 people completed the survey. There was no clear consensus on a preferred term, but 28.3% preferred the term 'unmet needs' for describing changes in behaviour associated with dementia. Qualitative data revealed important nuances and challenges for researchers and practitioners in relation to terminology for this paradigm. Participants felt that the language we use to talk about changes in behaviour could influence how people with dementia are viewed and treated and how people feel about themselves. CONCLUSION: The majority of participants were familiar with a range of terminology. There was no universal agreement on terminology, but there was an overall preference for terms that reflect the unmet needs likely to underlie perceived changes in behaviour. IMPACT: People with dementia raised concerns about the language used to describe changes in behaviour that can occur in dementia. There is scope for improvements in the language used for this paradigm in both research and practice. Following a diagnosis of dementia, clinicians need to take the time to explore an individual's preferences and understandings. They can then share their own understanding about the potential for changed behaviour and if relevant, how any negative impact of this may be minimized.

Training people with dementia/cognitive impairment and their carers in the use of web-based supportive technologies (Innovative practice).

Little is known about the training and support people with dementia and their carers need to use digital solutions. This paper shares learning from a bespoke programme that successfully trained people with dementia or mild cognitive impairment and their informal carers to use a social networking website. This work was undertaken as part of the European Horizon 2020 Caregiverspro-mmd trial (ISRCTN15654731). The training methods described offer an improved understanding of how best to deliver digital skills training that meets the needs of a diverse client group. The effectiveness of the programme is evidenced with qualitative and quantitative data.

The CAREGIVERSPRO-MMD Platform as an Online Informational and Social Support Tool for People Living With Memory Problems and Their Carers: An Evaluation of User Engagement, Usability and Usefulness.

People living with dementia or cognitive impairment (PwD) and their carers often have unmet needs for informational and social support postdiagnosis. Web-based platforms have the potential to address these needs, although few have been developed for use by both PwD and carers. The CAREGIVERSPRO-MMD platform was developed to provide both user groups with informational and peer-to-peer social support. Platform logging data were analyzed to assess the extent to which PwD (n = 37) and carers (n = 37) engaged with the platform and its social/informational features in their daily lives. Participants also provided feedback on the usefulness and usability of the platform. The majority of PwD and carers found the platform and its social/informational features useful and usable, and significant subsets of both groups utilized the platform regularly. However, carers engaged with the informational and social features to a greater extent than PwD, and users highlighted that PwD typically required regular support to use the platform.

A Web-Based Platform for People With Memory Problems and Their Caregivers (CAREGIVERSPRO-MMD): Mixed-Methods Evaluation of Usability.

BACKGROUND: The increasing number of people with dementia (PwD) drives research exploring Web-based support interventions to provide effective care for larger populations. In this concept, a Web-based platform (CAREGIVERSPRO-MMD, 620911) was designed to (1) improve the quality of life for PwD, (2) reduce caregiver burden, (3) reduce the financial costs for care, and (4) reduce administration time for health and social care professionals. OBJECTIVE: The objective of this study was to evaluate the usability and usefulness of CAREGIVERSPRO-MMD platform for PwD or mild cognitive impairment (MCI), informal caregivers, and health and social care professionals with respect to a wider strategy followed by the project to enhance the user-centered approach. A secondary aim of the study was to collect recommendations to improve the platform before the future pilot study. METHODS: A mixed methods design was employed for recruiting PwD or MCI (N=24), informal caregivers (N=24), and professionals (N=10). Participants were asked to rate their satisfaction, the perceived usefulness, and ease of use of each function of the platform. Qualitative questions about the improvement of the platform were asked when participants provided low scores for a function. Testing occurred at baseline and 1 week after participants used the platform. The dropout rate from baseline to the follow-up was approximately 10% (6/58). RESULTS: After 1 week of platform use, the system was useful for 90% (20.75/23) of the caregivers and for 89% (5.36/6) of the professionals. When users responded to more than 1 question per platform function, the mean of satisfied users per function was calculated. These user groups also provided positive evaluations for the ease of use (caregivers: 82%, 18.75/23; professionals: 97%, 5.82/6) and their satisfaction with the platform (caregivers: 79%, 18.08/23; professionals: 73%, 4.36/6). Ratings from PwD were lower than the other groups for usefulness (57%, 13/23), ease of use (41%, 9.4/23), and overall satisfaction (47%, 11/23) with the platform (P<.05). Qualitative comments related to both improvements for functionality and the platform interface. CONCLUSIONS: Although caregivers and professionals were overall satisfied with the platform, further adaptations were recommended by PwD. This reiterates the importance of the involvement of end users in the development of Web-based interventions. Recommendations from users in this paper apply for the interface and functionality of a wider range of Web-based support interventions.