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

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...

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Autores principales:	Alexandra Burton, Penny Rapaport, Marina Palomo, Kathryn Lord, Jessica Budgett, Julie Barber, Rachael Hunter, Laurie Butler, Jessica Vickerstaff, Kenneth Rockwood, Margaret Ogden, Debs Smith, Iain Lang, Gill Livingston, Briony Dow, Helen Kales, Jill Manthorpe, Kate Walters, Juanita Hoe, Vasiliki Orgeta, Quincy Samus, Claudia Cooper, on behalf of the NIDUS study team
Formato:	article
Lenguaje:	EN
Publicado:	BMC 2021
Materias:	Dementia Family carer Psychosocial intervention Independence Medicine (General) R5-920
Acceso en línea:	https://doaj.org/article/3e0048b8ebe743fa8550baac5930a38d
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spelling	oai:doaj.org-article:3e0048b8ebe743fa8550baac5930a38d2021-12-05T12:20:05ZClinical 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 trial10.1186/s13063-021-05851-z1745-6215https://doaj.org/article/3e0048b8ebe743fa8550baac5930a38d2021-12-01T00:00:00Zhttps://doi.org/10.1186/s13063-021-05851-zhttps://doaj.org/toc/1745-6215Abstract 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 2:1 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 2019Alexandra BurtonPenny RapaportMarina PalomoKathryn LordJessica BudgettJulie BarberRachael HunterLaurie ButlerJessica VickerstaffKenneth RockwoodMargaret OgdenDebs SmithIain LangGill LivingstonBriony DowHelen KalesJill ManthorpeKate WaltersJuanita HoeVasiliki OrgetaQuincy SamusClaudia Cooperon behalf of the NIDUS study teamBMCarticleDementiaFamily carerPsychosocial interventionIndependenceMedicine (General)R5-920ENTrials, Vol 22, Iss 1, Pp 1-14 (2021)
institution	DOAJ
collection	DOAJ
language	EN
topic	Dementia Family carer Psychosocial intervention Independence Medicine (General) R5-920
spellingShingle	Dementia Family carer Psychosocial intervention Independence Medicine (General) R5-920 Alexandra Burton Penny Rapaport Marina Palomo Kathryn Lord Jessica Budgett Julie Barber Rachael Hunter Laurie Butler Jessica Vickerstaff Kenneth Rockwood Margaret Ogden Debs Smith Iain Lang Gill Livingston Briony Dow Helen Kales Jill Manthorpe Kate Walters Juanita Hoe Vasiliki Orgeta Quincy Samus Claudia Cooper on behalf of the NIDUS study team 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
description	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 2:1 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
format	article
author	Alexandra Burton Penny Rapaport Marina Palomo Kathryn Lord Jessica Budgett Julie Barber Rachael Hunter Laurie Butler Jessica Vickerstaff Kenneth Rockwood Margaret Ogden Debs Smith Iain Lang Gill Livingston Briony Dow Helen Kales Jill Manthorpe Kate Walters Juanita Hoe Vasiliki Orgeta Quincy Samus Claudia Cooper on behalf of the NIDUS study team
author_facet	Alexandra Burton Penny Rapaport Marina Palomo Kathryn Lord Jessica Budgett Julie Barber Rachael Hunter Laurie Butler Jessica Vickerstaff Kenneth Rockwood Margaret Ogden Debs Smith Iain Lang Gill Livingston Briony Dow Helen Kales Jill Manthorpe Kate Walters Juanita Hoe Vasiliki Orgeta Quincy Samus Claudia Cooper on behalf of the NIDUS study team
author_sort	Alexandra Burton
title	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
title_short	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
title_full	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
title_fullStr	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
title_full_unstemmed	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
title_sort	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
publisher	BMC
publishDate	2021
url	https://doaj.org/article/3e0048b8ebe743fa8550baac5930a38d
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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

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