Protocol for the Rare Dementia Support Impact study: RDS Impact

Brotherhood, Emilie V.; Stott, Joshua; Windle, Gill; Barker, Steve; Culley, Siobhan; Harding, Emma; Camic, Paul M.; Caufield, Maria; Ezeofor, Victory; Hoare, Zoë; McKee‐Jackson, Roberta; Roberts, Julian V.; Sharp, Rebecca A.; Suárez‐González, Aida; Sullivan, Mary Pat; Edwards, Rhiannon Tudor; Walton, Jill; Waddington, Claire; Winrow, Eira; Crutch, Sebastian J.

doi:10.1002/gps.5253

Cited by 34 publications

(51 citation statements)

References 30 publications

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“…While the support care partners derived from their peers supports existing evidence ( Keyes et al, 2016 ; Smith et al, 2018 ), people with DLB also greatly valued their first opportunity to meet similarly placed others. This supports findings that established support groups are often not particularly relevant to people with rarer dementias owing to significant differences in age, life situations and symptoms ( Brotherhood et al, 2019 ). In addition, care partners can misconstrue the values and preferences of people with dementia in relation to autonomy and underestimate their decision-making ability ( Reamy et al, 2011 ), despite many developing their own coping strategies based on behavioural and cognitive techniques, which they can find it empowering to share ( Collerton and Dudley, 2004 ; Diederich et al, 2003 ).…”

Section: Discussionsupporting

confidence: 87%

The feasibility and acceptability of a psychosocial intervention to support people with dementia with Lewy bodies and family care partners

2021

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Objectives Psychosocial support for people with dementia with Lewy bodies (DLB) and family care partners is frequently lacking, despite the need expressed by those with lived experience. Our objective was to examine the feasibility and acceptability of an intervention designed to build coping capability. Design The design was non-randomised with all participants receiving the intervention. Setting The setting was a Memory Assessment and Management Service in the Northeast of England. Participants Participants comprised 19 dyads consisting of a person with DLB and a family care partner. Intervention The intervention was group-based, with weekly sessions attended for up to four successive weeks. It was informed by Social Cognitive Theory. Measurements Data were collected on recruitment, attendance and attrition, self-efficacy, mood, stress and participant experience. Results Recruitment was achieved with minimal attrition and three successive groups were delivered. Care partners felt more in control and able to cope in at least 3 of 13 areas with 73% feeling this way in eight or more areas. Three themes were identified from post-intervention interviews: people like us, outcomes from being a group member and intervention design. Conclusions A DLB-specific group intervention is acceptable to people with DLB and family care partners, and recruitment is feasible within a specialist service. Participation may enhance understanding of this condition and reduce social isolation. It may improve care partners’ coping capability particularly if targeted towards those with low prior understanding of DLB and more stress. Means of evaluating outcomes for people with DLB need further development.

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Section: Discussionsupporting

confidence: 87%

The feasibility and acceptability of a psychosocial intervention to support people with dementia with Lewy bodies and family care partners

2021

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“…Clinical academics who worked on the RDS Impact Project [ 45 ] had a number of discussions to integrate theoretical perspectives with earlier discussions and consequent adaptations to the planned groups. These discussions with experts by experience, academics, and clinicians led to a decision on initial content and themes for the field-testing round of groups discussed below ( Table 1 ), as well as a model describing flow through the groups and intended inputs and outputs ( Figure 1 ).…”

Section: Methodsmentioning

confidence: 99%

“…The VSGs are part of the larger RDS Impact Project, conducted under the University College London Research Ethics Committee (8545/004: RDS Impact Study). See the study by Brotherhood et al [ 45 ] for details on the ethical procedures and consent.…”

Section: Methodsmentioning

confidence: 99%

The Development of Videoconference-Based Support for People Living With Rare Dementias and Their Carers: Protocol for a 3-Phase Support Group Evaluation

Waddington¹,

Harding²,

Brotherhood³

et al. 2022

JMIR Res Protoc

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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. Objective We aim to develop facilitated videoconferencing support groups (VSGs) tailored to people living with or caring for someone with familial or sporadic frontotemporal dementia or young-onset Alzheimer disease, primary progressive aphasia, posterior cortical atrophy, or Lewy body dementia. This paper describes the development, coproduction, field testing, and evaluation plan for these groups. Methods We describe a 3-phase approach to development. First, information and knowledge were gathered as part of a coproduction process with members of the Rare Dementia Support service. This information, together with literature searches and consultation with experts by experience, clinicians, and academics, shaped the design of the VSGs and session themes. Second, field testing involved 154 Rare Dementia Support members (people living with dementia and carers) participating in 2 rounds of facilitated sessions across 7 themes (health and social care professionals, advance care planning, independence and identity, grief and loss, empowering your identity, couples, and hope and dementia). Third, a detailed evaluation plan for future rounds of VSGs was developed. Results The development of the small groups program yielded content and structure for 9 themed VSGs (the 7 piloted themes plus a later stages program and creativity club for implementation in rounds 3 and beyond) to be delivered over 4 to 8 sessions. The evaluation plan incorporated a range of quantitative (attendance, demographics, and geography; pre-post well-being ratings and surveys; psycholinguistic analysis of conversation; facial emotion recognition; facilitator ratings; and economic analysis of program delivery) and qualitative (content and thematic analysis) approaches. Pilot data from round 2 groups on the pre-post 3-word surveys indicated an increase in the emotional valence of words selected after the sessions. Conclusions The involvement of people with lived experience of a rare dementia was critical to the design, development, and delivery of the small virtual support group program, and evaluation of this program will yield convergent data about the impact of tailored support delivered to geographically dispersed communities. This is the first study to design and plan an evaluation of VSGs specifically for people affected by rare dementias, including both people living with a rare dementia and their carers, and the outcome of the evaluation will be hugely beneficial in shaping specific and targeted support, which is often lacking in this population. International Registered Report Identifier (IRRID) DERR1-10.2196/35376

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“…The reporting of the method and results from this survey complies with the CHERRIES survey reporting checklist (Eysenbach, 2004). This study was conducted as part of the RDS Impact study (Brotherhood et al, 2020) and granted permission by the UCL Research Ethics Committee (8545/004: RDS Impact Study).…”

Section: Methodsmentioning

confidence: 99%

The impact of the first UK Covid-19 lockdown on carers and people living with low prevalence dementia: results from the Rare Dementia Support survey

González

Harding

Zimmerman

et al. 2020

Preprint

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IntroductionThe public health measures imposed to contain Covid-19 during the first UK lockdown resulted in significant changes in the provision of community support and care for people with dementia. People with low prevalence and young-onset dementias often experience non-memory, behavioural or neuropsychiatric symptoms that require specialised support.ObjectiveWe explored the impact of the first Covid-19 lockdown on people living with low prevalence and young-onset dementia and their carers in the UK.MethodAn online survey, including eleven questions about the impact of the lockdown on both the person with dementia and their family caregivers was conducted. Participants were people living with dementia and caregivers who are members of the UK national-reach organisation Rare Dementia Support.Results184 carers and 24 people with dementia completed the survey. People with dementia experienced worsening of cognitive symptoms (70%), ability to do things (62%) and well-being (57%) according to their carers. Carers also reported a reduction in the support received for caring (55%). 93% of carers of people living in care homes reported a reduction in their ability to provide care. 26% of carers reported changes in the medication of the person with dementia during the lockdown. 74% of people with dementia reported decreased ability to connect with people socially.ConclusionsPeople with dementia experienced a worsening of dementia symptoms, removal of support and increased difficulty to connect with other people socially during the 1st wave of Covid-19. Carers encountered barriers to both receiving and providing support and a decline in their own mental health and well-being.Key points70 % of carers reported cognitive symptoms getting worse during the lockdown (e.g., the person with dementia being more disoriented and finding it more difficult to communicate).26 % of carers reported a change (initiation or increase) in medication in the person with dementia during the lockdown.79 % carers reported their own physical or mental health getting worse due to the lockdown. This increased to 93% when considering responses only from family carers of people living in care homes.93 % of family carers of people living in care homes found it harder to continue providing care and support for their relative due to Covid-19.

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Protocol for the Rare Dementia Support Impact study: RDS Impact

Cited by 34 publications

References 30 publications

The feasibility and acceptability of a psychosocial intervention to support people with dementia with Lewy bodies and family care partners

The feasibility and acceptability of a psychosocial intervention to support people with dementia with Lewy bodies and family care partners

The Development of Videoconference-Based Support for People Living With Rare Dementias and Their Carers: Protocol for a 3-Phase Support Group Evaluation

The impact of the first UK Covid-19 lockdown on carers and people living with low prevalence dementia: results from the Rare Dementia Support survey

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