Developing the New Interventions for independence in Dementia Study (NIDUS) theoretical model for supporting people to live well with dementia at home for longer: a systematic review of theoretical models and Randomised Controlled Trial evidence

Abstract

Purpose To build an evidence-informed theoretical model describing how to support people with dementia to live well or for longer at home. Methods We searched electronic databases to August 2018 for papers meeting predetermined inclusion criteria in two reviews that informed our model. We scoped literature for theoretical models of how to enable people with dementia to live at home independently, with good life quality or for longer. We systematically reviewed Randomised Controlled Trials (RCTs) reporting psychosocial intervention effects on time lived with dementia at home. Two researchers independently rated risk of bias. We developed our theoretical model through discussions with experts by personal, clinical and academic experiences, informed by this evidence base. Results Our scoping review included 52 studies. We divided models identified into: values and approaches (relational and recovery models; optimising environment and activities; family carer skills and support); care strategies (family carer-focused; needs and goal-based; self-management); and service models (case management; integrated; consumer-directed). The 11 RCTs included in our systematic review, all judged at low risk of bias, described only two interventions that increased time people with dementia lived in their own homes. These collectively encompassed all these components except for consumerdirected and integrated care. We developed and revised our model, using review evidence and expert consultation to define the final model. Conclusions Our theoretical model describes values, care strategies and service models that can be used in the design of interventions to enable people with dementia to live well and for longer at home. Trial registration PROSPERO 2018 registration number: CRD42018099693 (scoping review). PROSPERO 2018 registration number: CRD42018099200 (RCT systematic review).

“I just keep thinking that I don’t want to rely on people.” a qualitative study of how people living with dementia achieve and maintain independence at home: stakeholder perspectives

“…Existing approaches to facilitating independence draw upon relationship-centred [10], rightsbased [11], recovery [12], environmental [9,13] and family carer based models [14] to inform understandings of how best to achieve this. However to date, only two psychosocial interventions have resulted in an increase in the time people with dementia remain living in their own homes [15][16][17][18].…”

Effects of nonpharmacological interventions on functioning of people living with dementia at home: A systematic review of randomised controlled trials

“…Personcentred approaches, which optimise the environment and activities, support family carers, and are needs and goal-based, enable selfmanagement where possible, and are underpinned by a responsive, case management service model; are the models that appear to be most likely to be effective. 58 While there remains a paucity of evidence about how clinical teams can best support people living at home with dementia to delay functional decline, the existing evidence is consistent and should inform future intervention studies. Our findings would support further trials of interventions that are specially tailored to activities that are meaningful to the participant and delivered in home.…”

Time Investment for Program Implementation to Manage Neuropsychiatric Symptoms: An Observational Longitudinal Study in In-Home and Residential Care Settings

“…The training course was based on consideration of neuropsychiatric symptoms as communicating unmet needs [16][17][18]. Psychosocial interventions with goal-setting, such as providing pleasant activities, outdoor activities, and removal of environmental triggers were recommended to address these unmet needs based on global evidence [22]. The web-based tool was explained to each participating professional during the training course, held at the end of September 2019.…”

“…The study protocol was approved by the Ethics Board of the Tokyo Metropolitan Institute of Medical Science (number [19][20][21][22][23][24][25][26]. The research was conducted in accordance with the principles of the Declaration of Helsinki (version November 2013) and is in agreement with the law regarding medicalscientific research in humans.…”

“…The underlying causes can lie in different life areas, including psychiatric aspects. Therefore, dementia case management models should enable interdisciplinary team approaches, integrate complex networks of care professionals, and respond appropriately to the unmet needs of persons with dementia [2,20,22]. The Swedish BPSD-registry was launched in November 2010 to improve the care of persons with dementia by focusing on psychosocial interventions for neuropsychiatric symptoms [15].…”