Take a moment to think about your favourite things to eat and drink… For me it would be homemade apple pie and custard and a cup of tea, shared with my family or friends. Imagine if it were recommended to never have those things again. Would you be happy with that? Perhaps you would if it reduced some physical discomfort, but perhaps you would be happier having what you fancied, despite the potential negative physical impact.
My doctoral research on understanding the eating and drinking experiences of people living with dementia and dysphagia in care homes
My PhD is focused on understanding the eating and drinking experiences of people living with dementia and dysphagia in care homes. The term dysphagia refers to eating, drinking and swallowing difficulties. Swallowing is a complex process, controlled by several cranial and peripheral nerves and involves the timely, coordinated movements of a range of physical structures in the oral cavity (mouth), pharynx (back of the throat) and oesophagus (that leads from the throat to the stomach) (Shaw and Martino, 2013). In addition to these motor processes, swallowing also relies on cognitive functions, such as remembering to eat and drink and recognising food and eating utensils, as well as sensory inputs such as taste and smell. Because of this, there is a higher risk of dysphagia for anyone who has a disease or disorder that impacts brain function, such as dementia, as this has the potential to impact physical, cognitive and sensory functions. It is estimated that 50% of people living with dementia will develop dysphagia at some stage (Alagiakrishnan et al, 2013), with dysphagia becoming more prevalent as dementia progresses (RCSLT, 2013). It is widely acknowledged that significant gaps remain in the evidence base for supporting people who are living with dementia and dysphagia (Alagiakrishnan et al, 2013).
Food and drink are essential for physical sustenance; for the meeting of nutrition and hydrations needs. However food and drink are also important in addressing psychosocial needs. Food and drink are a key part of celebrations, rituals and belief systems, enabling people to establish and maintain ties with others, and allowing us to foster a sense of companionship with friends and family (Evans and Crogan, 2001). Mealtimes provide significant daily structure and have the potential to provide people living with dementia and those who support them with the opportunity to build caring relationships (Amella, 2002).
Sharing personal experiences via blogs
I am always so grateful to people who are living with dementia who share their lives so openly with others to facilitate reflection on what life might be like and how we might interact with individuals in the most supportive and respectful ways. Two blogs that I follow and highly value are written by Wendy Mitchell and Shelagh Robinson, both of whom live with dementia. They are both so generous with what they publically share and continue to influence my many roles – as a speech and language therapist; dementia care consultant and trainer; PhD student; and someone with personal experience of dementia.
Having difficulties with eating and drinking can have a significant impact on well-being and can impact social mealtimes, as described by Wendy in her blog post about food last November. Wendy wrote about her experiences of social eating becoming more difficult as a result of being increasingly “messy”; the challenges of decision making; the potential for a “coughing fit”; and not being able to cut something up (Mitchell, 2017). Wendy describes the thought of eating socially as “embarrassing” and states that her relationship with food is a sad one “as the love has gone”.
Help with eating and drinking difficulties
When individuals start to have difficulties with eating and drinking, there are a number of options available for helping to make the process easier, for example assistance from others with eating and drinking to cut food up or help with making decisions about what food and drink to buy and consume; thinking about the position you sit in when eating and drinking to reduce the risk of food and fluids going the ‘wrong way’ into the airway instead of the stomach; and avoiding certain foods and drinks that are more likely to cause difficulties. Diet and fluid modification is frequently recommended, however the impact of this can have a negative impact.
In March 2018, Shelagh published a blog post called ‘the road to hell is paved with good intentions’ where she talks about some of the groups of people she has been sharing her experiences with and their various responses. One paragraph in particular stood out to me:
“Safeguarding being taken to ridiculous lengths, with no reference to the Dementia statements. Remember ‘We have the right to take risks’. How badly that was received – with biblical justification – the idea that the statements which are the authentic voice of people living with Dementia can be disregarded because the professionals know best.” (Robinson, 2018)
Shelagh and the We Statements she refers to (Dementia Action Alliance, 2017) remind us that people living with dementia can choose to take risks, can choose to go against recommendations, can choose to eat an apple pie, even if the consequence might be that it goes down the wrong way and results in coughing or a chest infection. This desire to make choices and take risks are backed up by the Mental Capacity Act (2005) which states that people are permitted to make unwise decisions, which most people do probably every day. Decisions to eat high sugar content foods or to cross the road before the green man signals the safest time to cross, for example.
Highlighting the factors that increase well-being around eating and drinking
In my research I hope to highlight the factors that increase well-being around eating and drinking, and from the interviews that I have completed so far, choice and active participation in eating and drinking related activities have already been highlighted as being of importance. By giving voice to people living with dementia and dysphagia, I hope to improve the support available to make choices, take risks and be empowered to have positive experiences of eating and drinking.
- Alagiakrishnan, K., Bhanji, R. and Kurian, M. (2013) Evaluation and management or oropharyngeal dysphagia in different types of dementia: a systematic review. Archives of Gerontology and Geriatrics 56, 1-9.
- Amella, E.J. (2002) Resistance at mealtimes for persons with dementia. Journal of Nutrition, Health and Aging, 6, 117-122.
- Dementia Action Alliance (2017) Review of the dementia statements: companion paper. DAA.
- Evans, B., and Crogan, N. (2001). Quality improvement practices: Enhancing quality of life during mealtimes. Journal for Nurses in Staff Development, 17(3), 131−
- Mental Capacity Act (2005) http://www.legislation.gov.uk/ukpga/2005/9/pdfs/ukpga_20050009_en.pdf. Accessed 06 November 2017
- Mitchell, W. (2017) Dementia and food: 01 November. Which me am I today?: One person’s experience of living with dementia. https://whichmeamitoday.wordpress.com/2017/11/01/dementia-and-food Accessed 02 November 2017
- RCSLT (2013) RCSLT resource manual for commissioning and planning services for speech, language and communication needs: dementia. London: RCSLT.
- Robinson, S (2018) The road to hell is paved with good intentions. Living with dementia but loving life. https://fizzyhammers.com/2018/03/20/the-road-to-hell-is-paved-with-good-intentions Accessed 27 March 2018
- Shaw, S.M. and Martino, R. (2013) The normal swallow: muscular and neurophysiological control. Otolaryngologic Clinics of North America, 46 , 937-956.
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