The purpose of this study is to refine, implement and assess the acceptability and feasibility of an existing nutrition intervention applied to people living with dementia receiving home care.
In the United Kingdom, two-thirds of people with dementia live at home and rely on family and friends to support with eating and drinking. Making sure people eat and drink well when they have dementia can be difficult as dementia progresses. Many with dementia are therefore at risk of being undernourished. This can be caused by poor appetite as well as eating and swallowing problems. Being undernourished can lead to poorer health and quality of life for people with dementia (and their carers), increased hospital admissions and health care use costing around £23.5 billion in terms of health and social care expenditure. Home care workers provide care for people with dementia more frequently and for longer than healthcare professionals. Existing research and our engagement work indicate home care workers are well positioned to assess nutritional status and intervene early, but currently lack training, access to resources and support from NHS services. A more pro-active and wide-ranging approach to nutritional assessment and management is needed targeting interventions at home care workers and family carer dyads, with input from appropriate healthcare professionals. As a collaborative project, the TOMATO study aims to work together with home care workers, people with dementia, and family carers to adapt a nutrition intervention (initially developed for care home) to support people living with dementia at home with eating and drinking. The intervention includes training programme, toolkit with video, workbook and guides for staff and family carers, and resources and leaflets. This study will take place in Dorset, Midlands and West Yorkshire in two phases. Phase 1: The first phase involves adapting the existing nutrition intervention by getting feedback from people with dementia, family carers, home care staff and nutrition experts through semi-structured interviews. Phase 2: The second phase involves training home care workers to deliver the adapted approach to people with dementia and family carers (up to 32 participant dyads) in receipt of care at home. Information about food intake, weight, practicality, and costs of the approach will be gathered. Semi-structured interviews will also be conducted with participants living with dementia, their family carers, and home care managers to get their feedback on the approach. If feasible and acceptable (based on progression criteria), findings will inform the design of future trial (effectiveness/implementation research). The TOMATO patient and public involvement group which consist of family carers, people with dementia and home care workers will provide input throughout the study duration (including project design, delivery, analysis, reporting and dissemination of the findings).
Study Type
INTERVENTIONAL
Allocation
NA
Purpose
SUPPORTIVE_CARE
Masking
NONE
Enrollment
139
Nutrition training will be provided to home care staff to deliver the intervention via the participating Home Care Providers from two localities (South and North of England). This phase will involve identification of people with dementia on their caseload, preliminary assessment of potential impact via collection of quantitative data at baseline (pre-intervention), and at 4 months follow-up (4 months after the first visit by trained home care workers, following baseline). A process evaluation will be conducted to gather data on intervention fidelity and implementation (quantitative and qualitative).
Participating Home Care Organisation
Greater London, United Kingdom
Participating Home Care Organisation
North West Regions, United Kingdom
Participating Home Care Organisations
South West, United Kingdom
Participating Home Care Organisation
West Midlands, United Kingdom
Nutrition Intervention Refinement
Exploring the perspective of participants in phase 1 via semi-structured in-depth interviews (people with dementia, their family carers, and home care staff). • Qualitative analysis will be carried out to understand more about how nutritional care is currently provided for people with dementia at home and how our existing nutrition intervention can be adapted for home care.
Time frame: Phase 1 - 4 Months
Intervention Feasibility and Acceptability Testing
1. Recruitment: Percentage of participants recruited from participating home care provider. 2. Attrition rate: Percentage of participants who drop out of the study before completion. 3. Qualitative analysis of the feasibility and acceptability of the adapted intervention from the perspective of people with dementia, their family carers, and home care staff and healthcare professionals.
Time frame: Phase 2 - 11 Months
Nutritional status
Preliminary assessment at baseline and 4 months follow up: a. Nutritional status \- Body Mass Index (BMI): Body weight (kg) and height (m2) will be combined to determine BMI (weight (kg) / height (m2)). BMI of \< 20 kg/m2 will be an indicator of undernutrition.
Time frame: Phase 2 - 11 Months
Health-related quality of life
Preliminary assessment at baseline and 4 months follow up: b. Health-related quality of life for people with dementia and carers will be measured using * EuroQol 5-Dimension 5-Level (EQ-5D-5L) with a scale from 0 to 100; higher scores indicate better quality of life. * Dementia Quality of Life questionnaire (DEMQoL) and DEMQoL-Proxy; 4-point scale, higher scores indicate better quality of life.
Time frame: Phase 2 - 11 Months
Functional status
Preliminary assessment at baseline and 4 months follow up: c. Functional status * Functional status (Deterioration in Daily Living Activities in Dementia) using Modified Barthel Index measures; 2-point scale rating with 0 to 20 points. Higher score indicates greater independence. * Functioning status using Lawton-Brody Instrumental Activities of Daily Living Scale; 4-point scale. Higher scores indicate greater independence and better functional ability.
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Participating Home Care Organisation
Yorkshire, United Kingdom
Time frame: Phase 2 - 11 Months
Carer burden
d. Carer burden using Zarit Burden Interview; 0 to 88 points; higher scores indicate severe burden.
Time frame: Phase 2 - 11 Months
Process Evaluation
Process Evaluation at 4 months: a process evaluation to gather data on intervention fidelity and implementation. 1. Semi-structured interviews conducted individually, in pairs or small groups with participant dyads (family carers will be given the option to have a separate interview), home care workers and managers from the participating regions. 2. Associated costs variables to deliver the intervention.
Time frame: 11 Months [Phase 2