An intervention to improve sleep for people living with dementia: Reflections on the development and co-production of DREAMS:START (Dementia RElAted Manual for Sleep: STrAtegies for RelaTives)

Many people living with dementia experience sleep disturbances yet there are currently no known effective, safe and acceptable treatments. Working with those affected by dementia to co-produce interventions is increasingly promoted to ensure that approaches are fit for purpose and meet the specific needs of target groups. Our aim here is to outline and reflect upon the co-production of Dementia RElAted Manual for Sleep; STrAtegies for RelaTives (DREAMS:START), an intervention to improve sleep for people living with dementia. Our co-production team brought together experts in the development and testing of manualised interventions in dementia care and cognitive behavioural interventions for sleep disorders, with Alzheimer’s Society research network volunteers (ASRNVs) whose lives had been affected by dementia. Here we present the process of intervention development. We worked with (ASRNVs) at each stage of the process bringing together ‘experts by training’ and ‘experts by experience’. (ASRNVs)shared their experiences of sleep disturbances in dementia and how they had managed these difficulties, as well as suggestions for how to overcome barriers to putting the intervention into practice; making (DREAMS:START) more accessible and usable for those in need. In this paper we discuss both the benefits and challenges to this process and what we can learn for future work. Collaborating with ‘experts by experience’ caring for a relative with sleep difficulties helped us to develop a complex intervention in an accessible and engaging way which we have tested and found to be feasible and acceptable in a randomised controlled trial

Non-clinically trained facilitators’ experiences of remote psychosocial interventions for older adults with memory loss and their family carers

Background Dementia is the seventh leading cause of global mortality, with cases increasing. Psychosocial interventions might help prevent dementia and improve quality of life. Although it is cost-effective for non-clinically trained staff to deliver these, concerns are raised and little is known about the resulting impact on staff, especially for remote interventions.  Aims To explore how non-clinically trained facilitators experienced delivering remote, one-to-one and group-based psychosocial interventions with older adults with memory loss and their family carers, under training and supervision.  Method We conducted a secondary thematic analysis of interviews with non-clinically trained facilitators, employed by universities, the National Health Service and third-sector organisations, who facilitated either of two manualised interventions: the APPLE-Tree group dementia prevention for people with mild memory loss or the NIDUS-Family one-to-one dyadic intervention for people living with dementia and their family carers.  Results The overarching theme of building confidence in developing therapeutic relationships was explained with subthemes that described the roles of positioning expertise (subtheme 1), developing clinical skills (subtheme 2), peer support (subtheme 3) in enabling this process and remote delivery as a potential barrier to it (subtheme 4).  Conclusions Non-clinically trained facilitators can have positive experiences delivering remote psychosocial interventions with older adults. Differences in life experience could compound initial fears of being ‘in at the deep end’ and ‘exposed’ as lacking expertise. Fears were allayed by experiencing positive therapeutic relationships and outcomes, and by growing confidence. For this to happen, appropriate training and supervision is needed, alongside accounting for the challenges of remote delivery.</p

Care staff socio-demographic and employment characteristics.

<p>Care staff socio-demographic and employment characteristics.</p

Care staff primary themes and categories.

<p>Care staff primary themes and categories.</p

Contrasted main themes and categories.

<p>Contrasted main themes and categories.</p

Adjusted and unadjusted associations of proportion of staff reporting abusive behaviours^* occur at least sometimes and other factors studied (p<0.05 in bold).

<p>Adjusted and unadjusted associations of proportion of staff reporting abusive behaviours^{<a href="http://www.plosone.org/article/info:doi/10.1371/journal.pone.0193399#t005fn001" target="_blank">*</a>} occur at least sometimes and other factors studied (p<0.05 in bold).</p

Proportion of care staff reporting abusive behaviour at least sometimes by care home type.

<p>Proportion of care staff reporting abusive behaviour at least sometimes by care home type.</p

Number (%) of care home staff reporting that they had never or almost never seen or carried out each of the positive behaviours studied in the last 3 months.

<p>Number (%) of care home staff reporting that they had never or almost never seen or carried out each of the positive behaviours studied in the last 3 months.</p

Number (%) of care home staff reporting that they had seen or carried out each of the potentially abusive behaviours studied at least sometimes in the last 3 months.

<p>Number (%) of care home staff reporting that they had seen or carried out each of the potentially abusive behaviours studied at least sometimes in the last 3 months.</p

sj-doc-2-dhj-10.1177_20552076231205733 - Supplemental material for Improving the lives of ethnically diverse family carers and people living with dementia using digital media resources – Protocol for the Draw-Care randomised controlled trial

Supplemental material, sj-doc-2-dhj-10.1177_20552076231205733 for Improving the lives of ethnically diverse family carers and people living with dementia using digital media resources – Protocol for the Draw-Care randomised controlled trial by Antonia Thodis, Thu-Ha Dang, Josefine Antoniades and Andrew S. Gilbert, Tuan Nguyen, Danijela Hlis, Mary Gurgone, Briony Dow, Claudia Cooper, Lily-Dongxia Xiao, Nilmini Wickramasinghe, Nalika Ulapane, Mathew Varghese, Santosh Loganathan, Joanne Enticott, Duncan Mortimer, Bianca Brijnath in DIGITAL HEALTH</p