Knowledge Is Power: Utilizing Human-Centered Design Principles with People Living with Dementia to Co-Design a Resource and Share Knowledge with Peers.

This paper describes the process used by a group of people living with young-onset dementia to inform the development and delivery of a post-diagnosis peer guide. It draws on the four stages of human-centered design and applies them in a new context of supporting resilience for people following a diagnosis of dementia. (1) Discover: The group discussed in-depth their perspectives on what it takes to be resilient while living with dementia and how this can be maintained. (2) Define: The group decided to collate practical information and knowledge based on their personal experiences into a booklet to support the resilience of others following a diagnosis of dementia. (3) Develop: The booklet was designed and developed together with input from other people living with dementia, facilitated by the authors. (4) Deliver: The group guided the professional production of the booklet 'Knowledge is Power'. Over 8000 copies have been distributed to memory clinics, post-diagnostic support organizations and people living with dementia across Wales. A bilingual English-Scottish Gaelic adaptation and an adaptation for people in England have since been developed. The success of 'Knowledge is Power' highlights the importance of working alongside people with dementia to share knowledge and support their resilience.

'I have never bounced back': resilience and living with dementia.

OBJECTIVE: This work responds to the limited research about resilience when living with dementia and develops a conceptual model to inform service development and healthcare practices for this population. METHODS: An iterative process of theory building across four phases of activity (scoping review n = 9 studies), stakeholder engagement (n = 7), interviews (n = 11) generated a combined sample of 87 people living with dementia and their carers, including those affected by rare dementias to explore their lived experiences. An existing framework of resilience developed in other populations served as the starting point to analyse and synthesise the findings, inspiring a new conceptual model of resilience unique to the experience of living with dementia. RESULTS: The synthesis suggests resilience encompasses the daily struggles of living with a dementia; people are not flourishing, thriving or 'bouncing back', but are managing and adapting under pressure and stress. The conceptual model suggests resilience may be achieved through the collective and collaborative role of psychological strengths, practical approaches to adapting to life with dementia, continuing with hobbies, interests and activities, strong relationships with family and friends, peer support and education, participating in community activities and support from healthcare professionals. Most of these themes are not reflected in resilience outcome measures. CONCLUSIONS: Practitioners adopting a strengths-based approach utilising the conceptual model at the point of diagnosis and post-diagnosis support may help individuals achieve resilience through appropriately tailored services and support. This 'resilience practice' could also extend to other degenerative or debilitating chronic conditions a person faces in their life course.

A qualitative systematic review of the role of families in supporting communication in people with dementia.

BACKGROUND: Cognitive-communication difficulties are often associated with dementia and can impact a person's ability to participate in meaningful conversations. This can create challenges to families, reflecting the reality that people living with dementia rarely have just one regular conversation partner, but interact with multiple family members. To date, there is limited evidence of the impact of changes in communication patterns in families. A family systems approach, with foundations in psychology, can be used to explore the impact of communication difficulties on multiple different family members, including the person living with dementia and potential coping strategies used by individuals, together with the family as a whole. METHODS & PROCEDURES: A systematic review of primary qualitative research was conducted to identify and examine research exploring communication and interaction within families living with dementia. Studies were identified through a comprehensive search of major databases and the full-text articles were subject to a quality appraisal. We conducted a thematic analysis on the literature identified to consider the role of families in supporting communication for people with dementia. OUTCOMES & RESULTS: The searches identified 814 possible articles for screening against the eligibility criteria. Nine articles were included in the final review. Three major themes emerged from the analysis of the included studies: (1) 'identities changing' reflected how interactions within the family systems impacted on identities; (2) 'loss' reflected the grief experienced by families due to changes in communication; and (3) 'developing communication strategies' highlighted strategies and approaches that families affected by dementia may use organically to engage in meaningful interactions and maintain connection. Only one study explicitly used a family systems approach to understand how families manage the changes in interaction resulting from dementia. CONCLUSIONS & IMPLICATIONS: The findings may usefully inform the clinical practice of speech and language therapists in terms of communication strategies and coping mechanisms that may be advised to facilitate connection in families living with dementia. Further research using a family systems approach to exploring communication in dementia may help to support the implementation of family-centred practice as recommended in policy. WHAT THIS PAPER ADDS: What is already known on the subject There is increasing recognition of the impact of dementia on whole families and the need for family-centred interventions to enhance quality of life. However, much of the research to date that explores communication within families affected by dementia examines interaction between dyads, largely overlooking the roles and skills of other familial communication partners. To the authors' knowledge, there has been no previous review of the literature using a family systems approach, which has the potential to inform clinical practice of those working in dementia care. What this paper adds to existing knowledge The review examines and understands what is known about the approaches used by families affected by communication changes resulting from dementia to preserve connection. It collates the evidence from qualitative studies examining approaches and strategies used by individual conversation partners, including people with dementia, as well as the family system as a whole, to facilitate meaningful interactions, and proposes recommendations for clinicians working in this field. Furthermore, we consider the potential benefits of using a family systems approach to understand the context of people living with dementia and how this could enhance communication, personhood and well-being. What are the potential or actual clinical implications of this work? This review highlights practical conversation strategies and interactional approaches that may serve to enhance communication and preserve relationships between people with dementia and their family members. Such techniques have the potential to be advised by Speech and Language Therapists working in dementia care as part of tailored, relationship-centred care and support that they provide.

Using art for public engagement: reflections on the Dementia and Imagination project.

Creative outputs engage the public and can be used to share research. This paper reports on public engagement activities that were part of the research project Dementia and Imagination (D&I). We found that artwork and creative activities effectively engaged a range of audiences and challenged negative ideas about dementia. For the project team, public engagement developed relationships with collaborators and connected the research to different community settings, influencing future programmes of work. Further work could explore public engagement in diverse settings to assess which approaches are effective in maximising research value and wider community benefit.

A Collaborative Approach: Care Staff and Families Working Together to Safeguard the Quality of Life of Residents Living With Advanced Dementia.

OBJECTIVES: This study aimed to explore the quality of life and well-being of care home residents living with advanced dementia, how personalised care can be achieved where the person is completely dependent on others for care and how individuals' choices and human rights were upheld. METHODS: The study design used a qualitative approach, with data collected through in-depth, semi-structured interviews with 8 family members, all of whom visited daily, and 8 care staff. RESULTS: Emerging themes highlighted the importance of family involvement, signs of well-being, communication and the valued role of direct care staff. DISCUSSION: Participants were able to identify factors of residents' well-being in residents living with advanced dementia. Family members who visited daily saw themselves working collaboratively with care staff to maintain the quality of life of their relatives and engage in proxy decision making. Regarding human rights, the emphasis was on avoiding abuse, rather than promoting well-being.

The impact of a visual arts program on quality of life, communication, and well-being of people living with dementia: a mixed-methods longitudinal investigation.

ABSTRACTBackground:Research reviews highlight methodological limitations and gaps in the evidence base for the arts in dementia care. In response, we developed a 12-week visual art program and evaluated the impact on people living with dementia through a mixed-methods longitudinal investigation. METHODS: One hundred and twenty-five people living with mild to severe dementia were recruited across three research settings in England and Wales (residential care homes, a county hospital, and community venues). Quantitative and qualitative data on quality of life (QoL), communication and perceptions of the program were obtained through interviews and self-reports with participants and their carers. Eight domains of well-being were measured using a standardized observation tool, and data compared to an alternative activity with no art. RESULTS: Across all sites, scores for the well-being domains of interest, attention, pleasure, self-esteem, negative affect, and sadness were significantly better in the art program than the alternative condition. Proxy-reported QoL significantly improved between baseline and 3-month follow-up, but no improvements in QoL were reported by the participants with dementia. This was contrasted by their qualitative accounts, which described a stimulating experience important for social connectedness, well-being, and inner-strength. Communication deteriorated between baseline and follow-up in the hospital setting, but improved in the residential care setting. CONCLUSIONS: The findings highlight the potential for creative aging within dementia care, the benefits of art activities and the influence of the environment. We encourage dementia care providers and arts and cultural services to work toward embedding art activities within routine care provision.

Outcomes of a Comparison Study into a Group-Based Infant Parenting Programme.

This paper reports on a quantitative evaluation of a group-based programme designed to promote parent-infant attachment and child development. Whilst group-based parenting programmes are recommended for treating and preventing conduct disorder in older children, there is, as yet, little evidence as to whether they have a positive effect on very young children and their carers'. Recent UK Government initiatives to support families and improve parenting skills in the first 2 years of children's lives have increased the demand for the delivery and evaluation of community-based programmes. Eighty mother-child dyads were recruited from nine areas to intervention (n = 54) and control condition (n = 26). Baseline measures were collected in the children's home when the infants were on average 3-months-old, and follow-up measures were collected 6 months post-baseline (N = 63). Mothers' positive play behaviours were independently coded from video recordings taken in the home. Other measures included self-reported maternal confidence and mental well-being, assessed infant development and home environment. Socio-demographic data was collected once at baseline. After controlling for baseline scores, control mothers were observed to be significantly less sensitive during play with their baby at the 6 months follow-up with a significant increase in confidence. No differences were found between the groups on the other measures. This paper provides limited evidence for the effectiveness of the Incredible Years Parents and Babies group-based programme delivered in the first year of life. Further evaluation, particularly with parents at increased risk of poorer outcomes is needed to confirm and extend these results.