A mixed-methods feasibility study of a goal-focused manualised intervention to support people with dementia to stay living independently at home with support from family carers: NIDUS (New Interventions for Independence in Dementia Study) Family

Abstract

Objectives: To examine the feasibility and acceptability of NIDUS-Family, a 6-8 session manualised, individually tailored, modular intervention supporting independence at home for people with dementia; and explore participants' and facilitators' experiences of the intervention. Method: In this single group multi-site feasibility study, trained, supervised non-clinically qualified graduates (facilitators) delivered NIDUS-Family to family carer and people living with dementia dyads. We recruited participants from GP practices and memory services in London and Bradford. We completed quantitative outcomes pre-and post-intervention; and conducted qualitative interviews with participants and facilitators. Our pre-specified main outcomes were proportion of potential participants approached who agreed to participate, intervention adherence and acceptability to family carers, and facilitator fidelity to the manual. Results: We recruited 16 dyads (57% of those approached); 12 (75%) completed the intervention. Of 12 participants rating intervention acceptability, 9 (75%) agreed or strongly agreed that it had helped; 2 (18%) neither agreed nor disagreed and 1 (8%) disagreed. Mean facilitator fidelity was high (81.5%). Dyads set on average 3.9 goals; these most commonly related to getting out and about and increasing activity/hobby participation (n ¼ 10); carer wellbeing (n ¼ 6), managing physical complaints (n ¼ 6); meal preparation/cooking (n ¼ 5); and reducing irritability, frustration or aggression (n ¼ 5). Almost all secondary outcomes changed in a direction indicating improvement. In our qualitative analysis we identified three overarching themes; relationships facilitate change, goal-focused versus manualised approach and balancing the needs of carers and people with dementia. Conclusion: NIDUS-Family was feasible and acceptable to participants. Following refinements, testing in a pragmatic trial is underway.

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

“…The intervention has been modified in response to feasibility testing in a previous study [ 13 ], and therefore, no further modifications to the intervention are planned. The intervention is currently being delivered online/by telephone as opposed to face-to-face in response to restrictions imposed by the COVID-19 pandemic to ensure participant and facilitator safety.…”

“…We tested the feasibility of the intervention with 14 people living with dementia/family carer dyads. We found it to be acceptable to participants, and we used these findings to modify the training and intervention booklets in preparation for the full trial, based on feedback from participants receiving the intervention and the researchers delivering it [ 13 ].…”

Co-designing complex interventions with people living with dementia and their supporters

“…PPI members were also subsequently involved in recruiting and training facilitators for the pilot and main intervention trials. We describe the content of the final NIDUS-family intervention elsewhere ( Rapaport et al, 2020b ). A definitive RCT is currently underway ( Burton, 2020 ).…”

Managing neuropsychiatric symptoms in patients with dementia

“…Advocate for greater resources to improve timely and equitable access to multidisciplinary and social care in the community 37. Consider implementing a systematic approach based on a treatment manual (eg, DICE: describe, investigate, create, and evaluate) that supports people with dementia and carers in describing behaviours, investigating causes of behaviours, creating treatment plans that include potentially effective and feasible non-medication interventions, and evaluating these treatment plans 3839…”