PhD Project - The nutritional care of people living with dementia at home

Background

Two thirds of people with dementia are thought to be living at home, with an estimated 670,000 family and friends taking the role of primary carer (Prince et al., 2014).  This role includes meeting the individual’s health, emotional and social needs, which become more complex and demanding as the dementia progresses, and can have profound impacts on the individual, their family, and their carers (Fauth and Gibbons, 2014).

The nutritional needs of an individual with dementia should be an integral consideration of the holistic care provided at all stages of the disease.  Maintaining an individual’s nutritional status includes preventing unintentional weight loss (fat and muscle), and meeting fluid and micronutrient requirements. The interdependant relationship between the decline in nutritional status and cognition has been explored (Lee et al., 2009, Spaccavento et al., 2009), and this decline can begin in the early stages of the disease (before formal diagnosis), which if not addressed can increase the rate of progression to mortality, as well as increasing the risk of clinical vulnerability e.g. risk of falls, infections and pressure sores.  Carer surveys have indicated that there is a need for increased primary care support relating to the nutritional needs and consequences associated with dementia in those living at home (Alzheimer’s Society, 2012). Providing increased support regarding nutrition to caregivers could reduce feelings of burden, increase knowledge and improve nutritional outcomes for both patients and caregivers. To further reduce the burden experienced by family caregivers, domiciliary care support may be used, and can contribute to helping someone with dementia maintain an adequate nutritional status whilst living at home. Best practice guidelines have been published to support managers of domiciliary care agencies (Skills for Care, 2014), however there is limited literature that evaluates the nutritional care that these agencies provide, as well as capturing the views and experiences of domiciliary carers.

The purpose of this investigation is to provide new insights into what is known about meeting the nutritional needs of people living in their own homes with dementia, and to determine the experiences of those involved.   The outcomes from these investigations will inform a second phase of the investigations; the design of an intervention (using the MRC Complex Interventions Framework) which will aim to improve the nutritional care of people with dementia who live at home. The intervention will be piloted and its feasibility evaluated. The care setting chosen as the focus of this research project, the patient’s own home, aligns with government policy to provide seamless integrated care that focuses on keeping people in their own homes for longer, and therefore prevents unnecessary hospital admissions (The National Collaboration for Integrated Care and Support, 2013).

The research questions this project will answer are:

1. What is known about managing the nutritional status of people with dementia living at home from the perspectives of people with dementia, their carer’s, and other healthcare professionals involved in nutritional care?
2. How can the nutritional care provided by primary healthcare professionals and family carers of people living at home with dementia be improved?
3. What is the design of an intervention (incorporating the improvements identified in ii)) that will potentially lead to improved nutritional care for people with dementia living in their own home?
4. Is the intervention designed in iii) feasible for implementation in a complex primary healthcare system, as measured by nutritional outcomes and feedback on experience from people with dementia, their carer’s and other healthcare professionals involved?

The phases of this project are as follows:

Phase 1: Identifying the evidence base

To conduct a scoping review to establish the current evidence base regarding the nutritional care of people living with dementia at home.

Phase 2: Identifying and developing theory

To explore the views and experiences of those involved in providing nutritional care to people living with dementia at home through qualitative methods.

Phase 3:  Intervention development and Feasibility

To use the outcomes of the above to inform the design and feasibility test of a complex intervention.

Phase 4: To use the outcomes of the above to inform the design and feasibility testing of a complex intervention.

Progress

1. Phases 1-4 complete.  Training intervention (podcasts) produced and feasibility test conducted with domiciliary care workers.
2. Interview studies published in peer-review journals (see Outputs)

Next steps

1. Finalise thesis for submission in 2021.

Outputs

Mole L, Kent B, Abbott R, Wood C, Hickson M (2018). The nutritional care of people living with dementia at home: A scoping review. Health and Social Care in the Community 00:1–12.

Mole, L., Hickson, M., Kent, B. and Abbott, R. (2019a) ‘Family carers’ experiences of nutritional care for people living with dementia at home: An interpretative phenomenological analysis‘, Dementia, pp. 1471301219872032.

Mole, L., Kent, B., Hickson, M. and Abbott, R. (2019b) ‘‘It’s what you do that makes a difference’ An interpretative phenomenological analysis of health care professionals and home care workers experiences of nutritional care for people living with dementia at home’, BMC Geriatrics, 19(1), pp. 250.