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Clinical and cost-effectiveness of a New psychosocial intervention to support Independence in Dementia (NIDUS-family) for family carers and people living with dementia in their own homes: a randomised controlled trial.
Burton, Alexandra; Rapaport, Penny; Palomo, Marina; Lord, Kathryn; Budgett, Jessica; Barber, Julie; Hunter, Rachael; Butler, Laurie; Vickerstaff, Jessica; Rockwood, Kenneth; Ogden, Margaret; Smith, Debs; Lang, Iain; Livingston, Gill; Dow, Briony; Kales, Helen; Manthorpe, Jill; Walters, Kate; Hoe, Juanita; Orgeta, Vasiliki; Samus, Quincy; Cooper, Claudia.
  • Burton A; Department of Behavioural Science and Health, University College London, London, UK. a.burton@ucl.ac.uk.
  • Rapaport P; Division of Psychiatry, University College London, London, UK.
  • Palomo M; Camden and Islington NHS Foundation Trust, London, UK.
  • Lord K; The Centre for Applied Dementia Studies, University of Bradford, Bradford, UK.
  • Budgett J; Division of Psychiatry, University College London, London, UK.
  • Barber J; Department of Statistical Science, University College London, London, UK.
  • Hunter R; Research Department of Primary Care and Population Health, University College London, London, UK.
  • Butler L; Faculty of Science and Engineering, Anglia Ruskin University, Cambridge, UK.
  • Vickerstaff J; Division of Psychiatry, University College London, London, UK.
  • Rockwood K; Division of Geriatric Medicine, Dalhousie University, Halifax, Canada.
  • Ogden M; Alzheimer's Society Research Network Volunteers, London, UK.
  • Smith D; Alzheimer's Society Research Network Volunteers, London, UK.
  • Lang I; College of Medicine and Health, University of Exeter, Exeter, UK.
  • Livingston G; Division of Psychiatry, University College London, London, UK.
  • Dow B; National Ageing Research Institute, Royal Melbourne Hospital, Parkville, Victoria, Australia.
  • Kales H; Department of Psychiatry and Behavioral Sciences, UC Davis Health, University of California, California, USA.
  • Manthorpe J; NIHR Policy Research Unit in Health and Social Care Workforce, King's College London, London, UK.
  • Walters K; Research Department of Primary Care and Population Health, University College London, London, UK.
  • Hoe J; Division of Nursing, School of Health Sciences, City University of London, London, UK.
  • Orgeta V; Division of Psychiatry, University College London, London, UK.
  • Samus Q; Department of Psychiatry and Behavioral Sciences, Johns Hopkins University, Baltimore, MD, USA.
  • Cooper C; Division of Psychiatry, University College London, London, UK.
Trials ; 22(1): 865, 2021 Dec 02.
Article in English | MEDLINE | ID: covidwho-1551222
ABSTRACT

BACKGROUND:

Most people living with dementia want to remain living in their own homes and are supported to do so by family carers. No interventions have consistently demonstrated improvements to people with dementia's life quality, functioning, or other indices of living as well as possible with dementia. We have co-produced, with health and social care professionals and family carers of people with dementia, a new intervention (NIDUS-family). To our knowledge, NIDUS-family is the first manualised intervention that can be tailored to personal goals of people living with dementia and their families and is delivered by facilitators without clinical training. The intervention utilizes components of behavioural management, carer support, psychoeducation, communication and coping skills training, enablement, and environmental adaptations, with modules selected to address dyads' selected goals. We will evaluate the effect of NIDUS-family and usual care on goal attainment, as measured by Goal Attainment Scaling (GAS) rated by family carers, compared to usual care alone at 12-month follow-up. We will also determine whether NIDUS-family and usual care is more cost-effective than usual care alone over 12 months.

METHODS:

A randomised, two-arm, single-masked, multi-site clinical trial involving 297 people living with dementia-family carer dyads. Dyads will be randomised 21 to receive the NIDUS-family intervention with usual care (n = 199) or usual care alone (n = 98). The intervention group will be offered, over 1 year, via 6-8 video call or telephone sessions (or face to face if COVID-19 restrictions allow in the recruitment period) in the initial 6 months, followed by telephone follow-ups every 1-2 months to support implementation, with a trained facilitator.

DISCUSSION:

Increasing the time lived at home by people living with dementia is likely to benefit lives now and in the future. Our intervention, which we adapted to include remote delivery prior to trial commencement due to the COVID-19 pandemic, aims to address barriers to living as well and as independently as possible that distress people living with dementia, exacerbate family carer(s) stress, negatively affect relationships, lead to safety risks, and frequently precipitate avoidable moves to a care home. TRIAL REGISTRATION International Standard Randomised Controlled Trials Number ISRCTN11425138 . Registered on 7 October 2019.
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Full text: Available Collection: International databases Database: MEDLINE Main subject: Dementia / COVID-19 Type of study: Controlled clinical trial / Diagnostic study / Health economic evaluation / Qualitative research / Randomized controlled trials Limits: Humans Language: English Journal: Trials Journal subject: Medicine / Therapeutics Year: 2021 Document Type: Article Affiliation country: S13063-021-05851-z

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Full text: Available Collection: International databases Database: MEDLINE Main subject: Dementia / COVID-19 Type of study: Controlled clinical trial / Diagnostic study / Health economic evaluation / Qualitative research / Randomized controlled trials Limits: Humans Language: English Journal: Trials Journal subject: Medicine / Therapeutics Year: 2021 Document Type: Article Affiliation country: S13063-021-05851-z