'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.

BACKGROUND: People living with dementia at home are a group who are at increased risk of malnutrition. Health care professionals and home care workers, are ideally placed to support nutritional care in this vulnerable group. Yet, few, if any studies, have captured the experiences of these workers in respect of treating and managing nutritional issues. This interpretative phenomenological study aimed to explore the experiences and perceptions of the nutritional care of people living with dementia at home from the perspectives of health care professionals and home care workers. METHODS: Semi-structured interviews were conducted between December 2017 and March 2018, and supplemented with the use of a vignette outlining a scenario of a husband caring for his wife with dementia. Health care professionals and home care workers were purposively recruited from local care providers in the south west of England, who had experience of working with people with dementia. An Interpretative Phenomenological Analysis (IPA) approach was used throughout. RESULTS: Seven participants took part including two home care workers, a general practitioner, dietitian, occupational therapist, nurse and social worker. The time in their professions ranged from 3 to 15 years (mean = 8.9 years). Following analysis, four superordinate themes were identified: 'responsibility to care', 'practice restrained by policy', 'in it together', and 'improving nutritional care'. This group of health care professionals and home care workers recognised the importance of improving nutritional care for people living with dementia at home, and felt a responsibility for it. However they felt that they were restricted by time and/or knowledge. The importance of supporting the family carer and working collaboratively was highlighted. CONCLUSIONS: Health care professionals and home care workers require further training to better equip them to provide nutritional care for people living with dementia at home. Models of care may also need to be adapted to enable a more flexible and tailored approach to incorporate nutritional care. Future work in this area should focus on how health care professionals and home care workers can be better equipped to screen for malnutrition, and support changes to nutritional intake to mitigate malnutrition risk.

Family carers' experiences of nutritional care for people living with dementia at home: An interpretative phenomenological analysis.

OBJECTIVES: Few studies have captured the experiences of family carers who manage the nutritional needs of family members living with dementia at home. The identification and management of symptoms that may affect nutritional status is often reliant upon the family carer. This interpretative phenomenological study aimed to explore the experiences and perceptions of the nutritional care of people living with dementia at home from the perspectives of the family members who support them. METHOD: Semi-structured interviews were conducted between October 2017 and February 2018. Participants were also asked to keep a diary of experiences for two weeks before the interview. An Interpretative Phenomenological Analysis approach was used throughout.Findings: Eight participants, with a mean age of 69.6 years residing in South West England were recruited and represented a range of familial roles. Following analysis, three superordinate themes were identified: 'becoming carer and cook', 'changing role and relationships' and 'emotional eating'. CONCLUSION: Family carers make food and drink decisions daily, and feel a duty to take on the responsibility for food shopping and cooking. They are conscious about 'doing the right thing' when it comes to providing nutritional care, and some feel uncertain about the food choices they are making, particularly regarding a reliance on convenience foods. Changes in appetite, food preferences and mealtime habits related to dementia can lead to disruption affecting the dyad. It is important that family carers and people living at home with dementia are provided with adequate support regarding identifying nutritional risks, making appropriate food and drink choices and preventing the risk of malnutrition in the dyad.

The nutritional care of people living with dementia at home: A scoping review.

There are an increasing number of people with dementia living in their own home for longer, often supported by a family member. The symptoms of dementia can affect an individual's nutritional status, which can lead to a reduced quality of life for the person with dementia and their family members. A scoping review was conducted from July 2016 until September 2016, using a recognised framework, to explore what is currently known, and identify any gaps in the research regarding the nutritional care of people living with dementia at home. This included any interventions that may have been trialled or implemented, and the views of those living with dementia, carers and clinicians. Six electronic databases were searched from inception to July 2016. A review team was involved in screening and data extraction for selected articles. Published qualitative and quantitative studies were included that explored the nutritional care of people living with dementia at home. Methods included data extraction and conventional content analysis. Stakeholders were involved in the development of final categories. Following screening, 61 studies reported in 63 articles were included. Most studies were cross-sectional (n = 24), cohort (n = 15) or qualitative (n = 9). Only three were randomised controlled trials. Three overarching categories represented the results: Timely identification of nutritional risk and subsequent regular monitoring of nutritional status, multi-component tailored interventions and the influence of the care-giving dyad on nutritional status. Many studies identify people living at home with dementia as a vulnerable group prone to malnutrition; however, a lack of interventions exists to address the increased risk. There is a lack of research exploring the role of home care providers and healthcare professionals in the provision of nutritional care. Further research is required to explore how the emotional aspect of the care-giving dyad influences nutritional care.