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Struggling to Maintain Individuality
As nutrition scientists we love research statistics that allow us to look at relationships between diet and health, and to ascertain whether these relationships may be clinically significant. But what can we do when we need to explore food experiences and needs more deeply?
Just published this month in the journal Archives of Gerontology and Geriatrics is exactly such a study Struggling to maintain individuality– Describing the experience of food in nursing homes for people with dementia.
This type of qualitative research allows us to better understand individual needs, and may help to indicate changes for more effective personalised care.
A little background
Quality of life is a key focus in the current management of people with dementia across the disease spectrum. Food and the mealtime experience have an important influence on quality of life. Food provides more than just a way to meet physical nutritional requirements; it is a source of socialisation, dignity and nurturing, and can be strongly associated with memories, social occasions and emotions.
There are some factors that appear to put residents at particular risk of a poor mealtime experience, including cognitive impairment and dysphagia requiring texture modified foods or fluids. Studies and audits looking at nutrition care in nursing homes often focus on the process, organisational systems, and structure of mealtimes. It has been noted that staff can be more ‘task driven’ and concentrate on successfully moving through organisational systems, rather than responding to the experience of residents. It is perhaps understandable in busy, complex dining environments that care homes are keen on organisational frameworks and concentrate more on important protocols for completing food records, monitoring resident’s body weight, or referring for further assessments to dietitians. But this focus can lead to individual needs being lost.
From research, our understanding of the aspects of mealtimes that are important in older service users with good communication skills include:
- feeling respected,
- variety of menu and respect for choice,
- staff knowledge and attitudes,
- timing of meals,
- a calm and comfortable dining environment,
- food quality and suitability.
However the voice of service users with dementia is less often heard. They are a group that tends to be overrepresented in the setting, but underrepresented in research studies.
What did the study explore?
So the study set to answer two fundamental research questions through interviews with 13 participants who had a diagnosis of dementia or other cognitive impairment, and their family members (n= 6):
(1) Do people with cognitive impairment and their family members think that food and
dining in nursing homes is important?
(2) What are the aspects of food and dining in nursing homes that support and hinder quality of life for people with cognitive impairment?
The interview questions were directed to determine the important aspects of food and dining in nursing home settings, and how their preferences could be met. For example, participants were asked to describe the food and dining experience, and asked about whether the taste of the food, having a choice of meal, and the timing of the meal were important to them or not, and to explain why.
What themes did the study identify?
The study identified that
- Maintaining choice and individual preferences around food is important to people with cognitive impairment, but that their attempts to maintain their individual patterns could be frustrated by a systemic ‘one size fits all’
- Some participants expressed frustration at having to give up choice with regard to meals. Participants reflected on how normal this level of control was prior to living in residential care.
- Catering for and respecting the individual through the provision of a degree of control and involvement in what meals they eat and when they eat them, was a key determinant of whether the food and dining experience was a positive one or not.
‘Our wants are not always heard’
Although some participants felt that they had adequate choice and were able to input into food options provided, others described many situations where these individualised needs were not considered or met. The study participants did not always feel able to, or were worried about, expressing their preferences or felt that their requests with regards to meal timing, portion size, or choice of meal would not be respected.
The loss of choice and individual preference
As increasingly severe symptoms of dementia are experienced, a prior ability to verbalise or express needs and choices can diminish. The issue of loss of control and opportunities to make choices and have individualised preferences met was highlighted as a particular issue for people with more severe cognitive impairment. With disease progression participants reported that individualisation, recognition of choices and preferences was lost.
In the later stages of dementia, dysphagia becomes more common, and was found to have a particularly strong influence on the mealtime experience for both residents and family members. Texture modified meals and drinks were reported as uninspiring, repetitive, poorly presented and providing the resident with even less choice and control over food intake. Whilst some family members expressed the view that better presentation would assist with meal acceptance and could enhance quality of life, others, felt this would have limited impact. There is very little research that has looked at the experience of enjoyment or distaste from food in residents with severe cognitive impairment. We do need further research on whether an improvement in the characteristics of texture modified foods is an effective strategy to improve intake, nutritional status, and quality of life. However in the meantime, surely it should not be assumed that people with severe cognitive impairment do not respond to visual and sensory appearance of foods.
In short, the main study findings tracked a journey for people with cognitive impairment in nursing homes, where they initially sought to have their individual needs and preferences recognised and heard, expressed frustration at perceived barriers to receiving dietary care which met their preferences particularly as disease progressed, and ultimately described a deterioration of the amount of control and choice available with loss of self-feeding ability and dysphagia. We need to use findings like this to consider further how to incorporate individualised dietary care to fully implement person-centred care and support the quality of life of those receiving nursing home care.
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