Testing a new psychological intervention to support independence at home for people with dementia and their family or friends (NIDUS-Family study)

INTERVENTION: The intervention is manualised and delivered in up to eight face‐face sessions up to a 6‐month period followed by fortnightly to monthly telephone follow‐ups. Face‐to‐face sessions will be offered weekly/monthly and delivered in either the person’s home or at the researcher’s place of work, depending on participant preferences. It will be tailored to each participant depending on their preferences and needs for staying independent at home. In session one, the researcher will work through a manualised session to explore the participant’s identified goals, and map them to a menu of training modules that will be offered to help them address priorities and concerns. The researcher will guide participant’s to set and monitor progress with SMART goals, map their support networks and identify gaps, sign‐post participants to existing resources and services, identify tasks and activities linked to achieving their goals and map goals onto intervention modules. The modules will include information and strategies addressing the following areas: 1. Accepting care, arranging and planning for the future 2. Communicating with people living with dementia, family and professionals 3. Managing behaviours and challenging behaviours 4. Managing physical health conditions 5. Exercise, activity and mobility 6. Managing low mood, anxiety and apathy 7. Carer wellbeing and support 8. Safety, environment, telecare, strategies, supporting functioning at home 9. Relaxation and stress management strategies 10. Sleep, diet and healthy routines At the final appointment the researcher will bring together what has worked, both old and new strategies to help the participant put together a final individualised action plan. They will then conduct regular (fortnightly to monthly) telephone follow ups with particip CONDITION: Dementia ; Mental and Behavioural Disorders PRIMARY OUTCOME: ; Functioning of the person with dementia assessed using family carer‐rated Goal Attainment Scaling (GAS) at 12 months. The GAS questionnaire is valid, reliable and responsive to change in function in people with dementia living at home up to 12 months. Trained researchers will work with family carers and people with dementia to set SMART (Specific, Measurable, Achievable, Realistic and Timely) goals across domains of: cognition, instrumental activities of daily life/self‐care, mood, behaviour and mobility. Family carers will evaluate ‘performance’ on a minimum of three and maximum of five goals set at baseline, on a 5‐point scale ranging from 'much worse' to 'much better' than expected.; ; ; ; INCLUSION CRITERIA: People with dementia: 1. People with a documented diagnosis of dementia of any severity who are living in their own homes (including sheltered accommodation, where staff are not on site 24 hours a day) alone or with others 2. people with dementia who have a family carer willing to participate in the study Family carers: 3. In regular (at least weekly face‐to‐face or telephone contact) with the person with dementia 4. Can speak English sufficiently well to participate in the intervention SECONDARY OUTCOME: ; 1. Researcher‐assessed rating of achievement of goals assessed using Goal Attainment Scaling questionnaire at 12‐month follow‐up; 2. Functional independence (basic and instrumental activities of daily living) assessed by the carer using the Disability Assessment for Dementia scale at 12‐month follow‐up; 2. Quality of life of the person with dementia assessed by the carer using the DEMQOL proxy scale at 12‐month follow‐up; 3. Neuropsychiatric symptom severity assessed by the carer using the Neuropsychiatric Inventory‐Questionnaire at 12‐month follow‐up; 4. Carer's quality of life using the CarerQol scale at 12‐month follow‐up; 5. Apathy assessed by the carer using the brief Dimensional Apathy Scale at 12‐month follow‐up; 6. Carer's anxiety and depression assessed using the Hospital Anxiety and Depression Scale at 12‐month follow‐up; 7. Potentially abusive behaviours assessed using the Modified Conflict Tactics Scale at 12‐month follow‐up; 8. Services and support received by the person with dementia assessed using the Client Services Receipt Inventory (CSRI) including home care, hospitalisations, respite and all‐cause time to transition from home 12‐month follow‐up.; 9. Achievement of goals assessed by the person with dementia (if they are able) using Goal Attainment Scaling before and after the intervention; 10. Quality of life of the person with dementia assessed by the person themselves (if they are able) using the DEMQOL scale before and after the intervention; ;