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

Penny Rapaport, Alexandra Burton, Marina Palomo, Jessica Griffiths, Daniel Kelleher, Monica Leverton, Victoria Vickerstaff, Julie Barber, Megan Bird, Jessica Budgett, Jodie Birch, Kenneth Rockwood, Murna Downs, Kathryn Lord, Helen C. Kales, Gill Livingston, Peter Riley, Claudia Cooper

Research output: Contribution to journalArticlepeer-review

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 = 10); carer wellbeing (n = 6), managing physical complaints (n = 6); meal preparation/cooking (n = 5); and reducing irritability, frustration or aggression (n = 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.

Original languageEnglish (US)
JournalAging and Mental Health
DOIs
StateAccepted/In press - 2020

Keywords

  • caregiver
  • Dementia
  • feasibility studies
  • therapeutics

ASJC Scopus subject areas

  • Phychiatric Mental Health
  • Gerontology
  • Geriatrics and Gerontology
  • Psychiatry and Mental health

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