"A torch, a rope, a belly laugh": engaging with the multiple voices of support groups for people living with rare dementia.

Purpose: Rare forms of dementia bring unique difficulties related to age of onset, impact on family commitments, employment and finances, and also bring distinctive needs for support and care. The aim of the present study was to explore and better understand what the concept of support means for people living with different rare dementia (PLwRD) and their care-partners who attend ongoing support groups.

Methods: Representing seven types of rare dementia, source material was collected from 177 PLwRD and care-partners attending in-person support groups, with the goal of developing research-informed group poems, co-constructed by a facilitating poet.

"It's a Postcode Lottery": How Do People Affected by Dementia in Wales Experience Their Diagnosis and Post-Diagnostic Support, and How May These Be Improved?

National dementia strategies are government policies that guide the provision of appropriate support for people living with dementia. These strategies, developed through extensive stakeholder engagement, should be tailored to the cultural and demographic needs of a country. Using a mixed methods survey design, this study explored the aims of the Dementia Action Plan (2018-2022) for Wales (UK) around assessment, diagnosis, and post-diagnostic support, and assessed whether these are being realized.

'Talking lines': the stories of diagnosis and support as told by those with lived experience of rare forms of dementia.

Background: People living with, or caring for someone with, rare forms of dementia can encounter issues while obtaining a diagnosis and trying to access appropriate support. This can affect their wellbeing, quality of life, social relationships and employment status. This study makes use of an arts-based narrative approach to explore individual accounts of these experiences whilst also exploring how, in telling their stories, those affected by rare forms of dementia might invoke, and situate their stories in relation to, broader cultural narratives around dementia and illness.

Exploring experiential differences in everyday activities - A focused ethnographic study in the homes of people living with memory-led Alzheimer's disease and posterior cortical atrophy.

Background: Supporting ageing in place, quality of life and activity engagement are public health priorities for people living with dementia, but little is known about the needs and experiences of community-dwelling people with rarer forms of dementia with lesser known symptoms. Posterior cortical atrophy (PCA) is a rare form of dementia usually caused by Alzheimer's disease but which is characterised by diminished visual processing (rather than a dominant memory problem), which poses challenges for maintaining independence and accessing appropriate support.

Methods: This study used a comparative qualitative design and focussed ethnographic methods to explore experiential differences in activity engagement for 10 people with the most common, memory-led presentation of Alzheimer's disease and 10 people with posterior cortical atrophy within their everyday home environments.

Symptom-based staging for logopenic variant primary progressive aphasia.

Background And Purpose: Logopenic variant primary progressive aphasia (lvPPA) is a major variant presentation of Alzheimer's disease (AD) that signals the importance of communication dysfunction across AD phenotypes. A clinical staging system is lacking for the evolution of AD-associated communication difficulties that could guide diagnosis and care planning. Our aim was to create a symptom-based staging scheme for lvPPA, identifying functional milestones relevant to the broader AD spectrum.

"I Want to Do Something" - Exploring What Makes Activities Meaningful for Community-Dwelling People Living With Dementia: A Focused Ethnographic Study.

Supporting ageing in place, quality of life, and activity engagement are public health priorities for people with dementia. The importance of maintaining opportunities for meaningful activities has been widely acknowledged for those with dementia in long-term care, but little is known about what makes activities meaningful for, and how they are experienced by, people with different types of dementia in their own homes. This study used focussed ethnographic methods to explore the motivations and meanings of everyday activity engagement within the homes of 10 people with memory-led Alzheimer's disease and 10 people with posterior cortical atrophy.

'Misdiagnosed and Misunderstood': Insights into Rarer Forms of Dementia through a Stepwise Approach to Co-Constructed Research Poetry.

This study investigated co-constructed research poetry as a way to understand the lived experiences of people affected by rarer dementia and as a means to use poetry to convey those experiences to healthcare professionals. Using mixed methods, 71 people living with rarer dementia and care-partners (stakeholders) contributed to co-constructing 27 poems with professional poets; stakeholders' verbatim words were analysed with descriptive qualitative analysis. Stakeholders were also surveyed and interviewed about their participation.

How Do Care Partners of People with Rare Dementia Use Language in Online Peer Support Groups? A Quantitative Text Analysis Study.

We used quantitative text analysis to examine conversations in a series of online support groups attended by care partners of people living with rare dementias (PLWRD). We used transcripts of 14 sessions (>100,000 words) to explore patterns of communication in trained facilitators' ( = 2) and participants' ( = 11) speech and to investigate the impact of session agenda on language use. We investigated the features of their communication via Poisson regression and a clustering algorithm.

"Better Living with Non-memory-led Dementia": protocol for a feasibility randomised controlled trial of a web-based caregiver educational programme.

Background: Non-memory-led dementias such as posterior cortical atrophy (PCA), primary progressive aphasia (PPA) and behavioural variant frontotemporal dementia (bvFTD) are low prevalent and often affect individuals under the age of 65. Tailored educational and support resources for caregivers of people living with these dementia phenotypes are scarce and unevenly distributed geographically. Web-based educational programmes are emerging as promising alternatives to improve caregiver self-efficacy and well-being.

Situating support for people living with rarer forms of dementia.

Background: Awareness of a multitude of diseases that can cause neurodegenerative decline and their unique symptom profiles in the dementia care and support sectors remains limited. Obtaining an accurate diagnosis and post-diagnostic care and support is a challenge for many people and their families. As part of a larger study examining multi-component forms of support for people living with rarer dementias, the aim of this present study was to examine how rare dementia was situated within the complex social groupings, their organization and embedded discursive constructions that broadly form dementia care and support delivery.

Symptom-led staging for semantic and non-fluent/agrammatic variants of primary progressive aphasia.

Introduction: Here we set out to create a symptom-led staging system for the canonical semantic and non-fluent/agrammatic variants of primary progressive aphasia (PPA), which present unique diagnostic and management challenges not well captured by functional scales developed for Alzheimer's disease and other dementias.

Methods: An international PPA caregiver cohort was surveyed on symptom development under six provisional clinical stages and feedback was analyzed using a mixed-methods sequential explanatory design.

Results: Both PPA syndromes were characterized by initial communication dysfunction and non-verbal behavioral changes, with increasing syndromic convergence and functional dependency at later stages.

Video Conferencing Peer Support and Rarer Forms of Dementia: An Exploration of Family Carers' Positive Experiences.

Little is known regarding the nuanced experiences of family carers for people living with rare dementias (PLWRD), with no known literature exploring their positive experiences of caring discussed within peer support group settings. This article explores family carers of PLWRD's positive experiences reported in video conferencing peer support groups. Six peer support group sessions involving a total of nine participants were qualitatively analysed using thematic analysis, guided by the conceptual framework of positive aspects of caring (CFPAC) (Carbonneau et al.

A mixed methods evaluation of a program exploring predeath grief and loss for carers of people with rarer dementias.

Objectives: Predeath grief conceptualizes complex feelings of loss experienced for someone who is still living and is linked to poor emotional well-being. The Road Less Travelled program aimed to help carers of people with rarer dementias identify and process predeath grief. This study evaluated the feasibility, acceptability, and preliminary effectiveness of this program.

'The oxygen of shared experience': exploring social support processes within peer support groups for carers of people with non-memory-led and inherited dementias.

Objectives: To explore support processes and behaviours taking place during online peer support groups for family carers of people living with rare, non-memory-led and inherited dementias (PLWRD).

Methods: Twenty-five family carers of PLWRD participated in a series of ongoing online peer support groups on the theme of 'Independence and Identity'. Transcripts from 16 sessions were analysed using qualitative directed content analysis with a coding framework informed by Cutrona & Suhr's (2004) Social Support Behaviour Code (SSBC).

Symptom-led staging for primary progressive aphasia.

The primary progressive aphasias (PPA) present complex and diverse challenges of diagnosis, management and prognosis. A clinically-informed, syndromic staging system for PPA would take a substantial step toward meeting these challenges. This study addressed this need using detailed, multi-domain mixed-methods symptom surveys of people with lived experience in a large international PPA cohort.

Singing and music making: physiological responses across early to later stages of dementia.

: Music based interventions have been found to improve wellbeing for people with dementia. More recently there has been interest in physiological measures to provide additional information about how music and singing impact this population. This multiple-case study design explored physiological responses (heart rate-HR, electrodermal activity-EDA, movement, and skin temperature-ST) of nine people with mild-to-moderate using simulation modelling analysis.

A systematic review and psychometric evaluation of resilience measurement scales for people living with dementia and their carers.

Psychometrically sound resilience outcome measures are essential to establish how health and care services or interventions can enhance the resilience of people living with dementia (PLWD) and their carers. This paper systematically reviews the literature to identify studies that administered a resilience measurement scale with PLWD and/or their carers and examines the psychometric properties of these measures. Electronic abstract databases and the internet were searched, and an international network contacted to identify peer-reviewed journal articles.

Peer support for people living with rare or young onset dementia: An integrative review.

Objectives: The aim of this integrative review was to identify and synthesize the literature on peer support interventions for people living with or caring for someone with a rare or young onset dementia.

Design: A literature search of articles was performed using the Nipissing University Primo search system, a central index that enables simultaneous searches across databases which included MEDLINE (PubMed), Web of Science, PsycINFO, CINAHL, Sociological Abstracts, Cochrane Library.

Results: The eleven papers that met the inclusion criteria spanned eighteen years and from five countries.

Arts-based interventions for people living with dementia: Measuring 'in the moment' wellbeing with the Canterbury Wellbeing Scales.

There is growing acknowledgement for the need to move beyond exclusive biomedical understandings of dementia and also focus on how to improve the lives and wellbeing of people living with dementia. A mounting body of research advocates for the benefits of arts-based interventions for this population. The purpose of this study was to explore the links between multiple components of arts-based interventions and subjective wellbeing in order to help assess if these activities might contribute to meaningful community-based dementia care initiatives.

Development of the Video Analysis Scale of Engagement (VASE) for people with advanced dementia.

: The current study sought to develop a valid, reliable and unobtrusive tablet computer-based observational measure to assess engagement of people with advanced dementia. The Video Analysis Scale of Engagement (VASE) was designed to enable the rating of moment-by-moment changes in engagement during an activity, which would be useful for both future research and current residential care. : An initial version of the VASE was tested.

Subjective wellbeing in people living with dementia: exploring processes of multiple object handling sessions in a museum setting.

Dementia care guidance highlights the importance of supporting people living with dementia to access engaging and meaningful activities to promote their quality of life. There is a growing evidence base for the efficacy of heritage settings and arts-based interventions to provide social prescribing opportunities to help support wellbeing in this population. This study extended previous research and explored the potential processes underlying this effect in multiple small group object handling sessions in a museum setting.

Exploring the Effects of a Golf Program on Psychological and Social Wellbeing for People With Dementia, Carers, and Staff.

There is a paucity of evidence regarding the effects of sport and physical activity on wellbeing in dementia. The present study is the first known study to involve golf with this population. People with dementia (n = 10) and carers (n = 5) participated in a 6-week golf program, facilitated by golf center staff (n = 3).