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Introduction
Research includes ESRC-NIHR funded study (2019-24) examining the impact of multicomponent support groups for those living with rare dementias; Wellcome Trust funded Created Out of Mind arts, sciences and dementia (2016-18); ongoing development of the Canterbury Wellbeing Scales.
Additional affiliations
September 2005 - September 2009
June 2005 - May 2019
Education
July 1983 - June 1984
July 1979 - April 1983
September 1977 - May 1979
Publications
Publications (180)
Creativity research has a substantial history in psychology and related disciplines; one component of this research tradition has specifically examined artistic creativity. Creativity theories have tended to concentrate, however, on creativity as an individual phenomenon that results in a novel production, and on cognitive aspects of creativity, of...
Background: 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 exp...
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 po...
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 acco...
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 De...
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...
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 exp...
Background
It is estimated that rare forms of dementia account for about 7% of all dementias and 10–20% of dementias for those under the age of 65. These conditions bring unique difficulties related to age of onset, impact on family commitments, employment and finances, and also bring distinctive needs for support and care in contrast to Alzheimer’...
Background
People living with, or caring for someone with, rarer forms of dementia can encounter, among other issues, challenges to wellbeing, social relationships and employment status in the wake of a diagnosis. This study makes use of a creative, arts-based narrative approach to explore individual accounts of these experiences whilst also explor...
Citation: Hayes, O.S.; El Baou, C.; Hardy, C.J.D.; Camic, P.M.; Brotherhood, E.V.; Harding, E.; Crutch, S.J., on behalf of the Rare Dementia Support (RDS) Research Team. How Do Care Partners of People with Rare Dementia Use Abstract: We used quantitative text analysis to examine conversations in a series of online support groups attended by care pa...
Background
Music has gained more attention than other art forms as a potent tool in supporting cognitive, emotional and social functioning in dementia populations. Methods for measuring moment‐to‐moment responses ‐ rather than comparing pre‐ and post‐stimulus effects ‐ may enable tailoring of musical experiences for the individual. The current stud...
Background
Dementias starting with symptoms other than memory are low prevalent. Educational and training resources for caregivers of people living with these conditions are scarce and difficult to access. The aim of this trial is to test the feasibility of an online training program for carers of people with three non‐memory led dementias: Posteri...
Background
Disease‐specific and general support is available for individuals experiencing rare [genetic and/or non‐memory‐led] dementia, broadly categorised into: professionally‐led [e.g. interacting with specialist support teams/resources] or socially‐oriented [e.g. large/small groups, buddying, online fora, and social media] offers. Membership of...
Background
Compared to global prevalence data for common forms of dementia (Alzheimer’s disease, vascular dementia, and mixed Alzheimer’s and vascular dementia), our understanding of the prevalence of atypical, inherited, and young onset forms of dementia is poor. Furthermore, estimates are biased towards figures from a subset of countries and regi...
Background
Hope is an essential component of the human experience and can play a critical role in sustaining wellbeing and a good quality of life. It can seem somewhat at odds however with the dominant societal discourses around dementia, which, stemming from a biomedical perspective, are often (naturally) focused on deficits and decline. With rece...
Background
Music has gained more attention than other art forms as a potent tool in supporting cognitive, emotional and social functioning in dementia populations. Methods for measuring moment‐to‐moment responses ‐ rather than comparing pre‐ and post‐stimulus effects ‐ may enable tailoring of musical experiences for the individual. The current stud...
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 scar...
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-compone...
Background
People living with, or caring for someone with, rarer 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 acc...
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...
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...
People affected by rarer forms of dementia often have a long and difficult experience obtaining a diagnosis and appropriate support, impacting family, employment and social relationships, quality of life and wellbeing. For this population progressive cognitive symptoms affect skills other than memory and disproportionately occur under the age of 65...
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 sca...
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 effect...
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'...
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 ex...
Rural areas tend to be inhabited by more older people and thus have a higher prevalence of dementia. Combined with lower population densities and more sparse geography, rural areas pose numerous barriers and costs relating to support and resource provision. This may leave people with dementia in rural places at a significant disadvantage, leading t...
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 ca...
Objective
To study how activities of daily living (ADLs) decline over the progressive course of rarer dementias (prevalence below 10%), in a systematic review of the literature.
Methods Relevant studies were identified by searching Medline, Embase, Emcare, PsycINFO and Cinahl. The databases were searched for terms relating to (rarer dementias) AND...
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 simultaneou...
The importance of museum-based interventions for people with dementia has been increasingly appreciated. Yet, there is relatively little known about the psychological and social impacts of these interventions. To address this, the authors undertook a systematic review to elucidate these aspects of museum-based programmes for people with mild-to-mo...
BACKGROUND: People living with rarer dementias face considerable difficulty accessing tailored information, advice, and peer and professional support. Web-based meeting platforms offer a critical opportunity to connect with others through shared lived experiences, even if they are geographically dispersed, particularly during the COVID-19 pandemic....
People living with rarer forms of dementia tend to have progressive cognitive symptoms affecting skills other than memory and/or onset before the age of 65 years. They are often misdiagnosed and due to symptom profile or age of onset, do not usually fit well with care pathways designed for older people with typical Alzheimer’s disease or vascular d...
Background : 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.
Methods: This multiple-case study design explored physiological responses (heart rate-HR, electrod...
Background:
People living with rarer dementias face considerable difficulty accessing tailored information, advice, and peer and professional support. Web-based meeting platforms offer a critical opportunity to connect with others through shared lived experiences, even if they are geographically dispersed, particularly during the COVID-19 pandemic...
BACKGROUND
People living with rarer dementias face considerable difficulty accessing tailored information, advice, and peer and professional support. Web-based meeting platforms offer a critical opportunity to connect with others through shared lived experiences, even if they are geographically dispersed, particularly during the COVID-19 pandemic....
Background : Music based interventions have been found to improve the wellbeing of people living with dementia. More recently there has been interest in physiological measures to provide additional information about how music and singing impact this population.
Methods: This multiple-case study design explored physiological responses (heart rate-HR...
Background: Music based interventions have been found to improve the wellbeing of people living with dementia. More recently there has been interest in physiological measures to provide additional information about how music and singing impact this population. / Methods: This multiple-case study design explored physiological responses (heart rate-H...
Background: 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 exp...
Qualitative methods of research contribute valuable information to our understanding and expanding knowledge of psychological phenomena.
This updated edition of Qualitative Research in Psychology builds upon the groundwork laid by its acclaimed predecessor, bringing together a diverse group of scholars to illuminate the value that qualitative meth...
Background : 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...
BACKGROUND: 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 b...
Background: 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.
Methods: This multiple-case study design explored physiological responses (heart rate-HR, electrode...
BACKGROUND: Music based interventions have been found to improve the wellbeing of people living with dementia. More recently there has been interest in physiological measures to provide additional information about how music and singing impact this population. METHODS: This multiple-case study design explored physiological responses (heart rate-HR,...
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). Multiple avenues of data c...
Background: 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 wellbein...
Background : 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...
Background: 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 b...
Background: 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 exp...
Background: 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 exp...
Background: 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 wellbein...
BACKGROUND: 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 exp...
Dementia is a neurodegenerative syndrome that can lead to profound psychological and social challenges for people with dementia and their informal caregivers. Previous research has found positive effects of arts‐based interventions for people with dementia and caregivers that have been dyadic in nature and the present article sought to review these...
Background : 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...
Background and objectives:
Research has indicated the benefit of music interventions on biological, psychological, and cognitive aspects of dementias, yet there is limited research focusing on music's role in communication. This study developed a conceptual understanding of how people with late-stage dementia may express themselves nonverbally and...
Objectives:
The Rare Dementia Support (RDS) Impact study will be the first major study of the value of multicomponent support groups for people living with or supporting someone with a rare form of dementia. The multicentre study aims to evaluate the impact of multicomponent support offered and delivered to people living with a rare form of dement...
We describe a transdisciplinary research programme called Created Out of Mind which draws together artists, scientists and people living with rarer forms of dementia. The importance of subjective, lived experiences of dementia is highlighted as a key driver of research conducted during our arts-science residency in The Hub, Wellcome Collection. We...
Background: This literature review examined the existing evidence base for the impact of both live and recorded music interventions involving active participation in a dementia population.
Methodology: PsycINFO, Medline, CINAHL, Web of Science, PubMed and Cochrane Library were searched and 15 studies met inclusion criteria.
Results: There was a pos...
Research suggests that experience of the natural environment may have a range of beneficial outcomes for children and young people. A systematic review of the peer-reviewed empirical literature focused on research involving direct interaction with nature amongst children and young people and its impact on wellbeing; 14 papers, within the domains of...
Rare forms of dementia account for 5-15% of all dementia diagnoses, with initial symptoms including changes in behaviour, language, or visuospatial perception. The needs of people with a rare type of dementia at all disease stages differ to those diagnosed with memory-led Alzheimer’s disease. Yet research in this area is relatively sparse and speci...
Objectives:
This study aimed to investigate factors influencing referral of children with physical illness to paediatric psychology. Due to high rates of mental health problems within this population, studies have shown that referral to paediatric psychology should be increased. However, few studies have examined factors shaping healthcare profess...
Introduction: Moving house later in life can be a major transition and valued material objects may be important to this process. The present study aimed to develop an explanatory model for the meanings of material objects to older adults in the context of a residential transition.
Method: Using grounded theory methodology, 12 participants were inte...
Introduction: Nearly all community-based dementia care studies employ either qualitative methods or use a combination of self-report questionnaires within mixed-methods research designs. Physiological measures, however, are rarely used in community-based studies with this population yet could provide valuable biological information for specific act...
In Western society, identity formation is argued to be one of the key developmental tasks of adolescence. Despite implications for adolescent development, research into chronic illness (CI) onset during this period has been notably sparse. This study aimed to explore how diagnosis impacts on the developmental tasks of adolescence, what role adolesc...