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06.12.2018

How dysphagia changes the perception of food in ALS - the perspectives of people with ALS and their caregivers Dr. Dominika Lisiecka, PhD, SLT. 06.12.2018. 2003. 2003. 2003 - now. 2006. 2017. University College Cork. University of Limerick. Why perceptions of food?.

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06.12.2018

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  1. How dysphagia changes the perception of food in ALS - the perspectives of people with ALS and their caregivers Dr. Dominika Lisiecka, PhD, SLT 06.12.2018

  2. 2003 2003

  3. 2003 - now

  4. 2006

  5. 2017 University College Cork University of Limerick

  6. Why perceptions of food? • Perception of food influences the way we shop, cook and dine. • Perception of food can dictate our schedules of meals. • Perception of food can be influenced by our age, health, culture, lifestyle, and more.

  7. Shift in eating habits • Over the last century, our eating habits have changed dramatically. • Convenience food has become much more popular. • We dine out more than we did in the past. • Nowadays, food choices are dictated mainly by social norms and associated with our emotions and feelings.

  8. Why do we eat what we eat? • Food choice is a complex human behaviour influenced by many interrelating factors (from biological mechanism and genetic profiles to social and cultural factors). • Food choice is not solely based on our biological needs, but is influenced by many psychological and emotional issues. • A person does not necessarily have to be hungry to eat. • A person does not always choose his/her most preferred food. • Some of the influences in food choice might be unconscious. (Conner & Armitage, 2002)

  9. Questions • Can dysphagia influence person’s perception of food? • Can ALS influence person’s perception of food? • Can caring for a person with ALS influence personal perception of food?

  10. Perceptions of food in ALS • Is it important? 1. Nutrition is important in ALS 2. Food routines can impact on social and family life 3. Perceptions of food can influence the compliance with food related professional recommendations in ALS

  11. Context of study • South-West of Ireland • 10 PALS and dysphagia • 10 caregivers • 61 interviews in total • 19 observations of a mealtime • Data collection – 9 months

  12. Methodology: Interpretative Phenomenological Analysis (IPA) • Data analysis: individual in-depth analysis before group analysis • My main interest: experience of dysphagia in ALS

  13. People with ALS (n=10) • Mean age: 67.2 (55-80) • 5 male, 5 female • 80% married • 80% retired • Mean time since diagnosis: 20 months (2mo-6 yrs) • Cognition WNL • 50% had a gastrostomy tube • 80% were on modified oral diet, 20% exclusively non-oral diet

  14. Caregivers (n=10) • Mean age: 57.5 (37-83) • 8 female, 2 male • 100% married • 60% employed • 60% spouses, 40% offspring • Mean time since diagnosis: 24.5 months (2 mo-7yrs)

  15. “I love soda bread, but had to recently change...” Results: PALS ↓ Enjoyment from food “I eat the same meals everyday” “Swallow is a bit off-putting” “I get full quicker and maybe tiredness is a factor” “I had 2 cups of tea. I didn’t enjoy it”

  16. “Literary everything gets chopped down”” Results: Caregivers “I now buy double cream on very regular basis” “There is going to be no more T-bone steaks” “Nobody can eat in front of her” “When I am cooking I have to have the door closed ” “I feel bad when I am eating”

  17. Similarities

  18. Food influences the course of ALS “On day one the first thing, one of the Motor Neuron nurses said, just keep the weight on” “Food is really important for the muscles. Before I didn’t care” “I MUST have full breakfast, lunch and dinner” “I think about calories all the time“

  19. Fear of choking “He’s putting a load of stuff on the fork. I’m there going please don’t choke on that”. “You had the most ferocious feeling of panic that I was going to choke”.

  20. Food perceived as risk “You were uneasy all the time when she was eating because you’d be kind of watching was it going down or was it staying and getting stuck”. “I have to be careful. About bite size”. “The food is on my mind. I don’t want him choke”. “For safety I stopped eating”

  21. Conclusions • ALS can influence personal perceptions of food. • This perception is further influenced by the presence of dysphagia. • Food was compared to a ‘fuel’ and considered as a medication. • Food can be associated with strong emotions in ALS, especially when oral intake is poor. • Fear of choking may be strong in people living with ALS.

  22. Implication for practice • Ask about personal perception of food. • Perception of food may impact on the level of compliance with food related recommendations. • Fear of choking has multiple consequences for people living with ALS and should be addressed.

  23. Acknowledgements • All participants for their time and honesty. • Health Research Board for funding this study. • My supervisors: Dr. H. Kelly and Prof. J. Jackson, UCC. • My collaborators: Prof. O. Hardiman, Dr. H. Moore, IMNDA. • My mentor: Dr. A. McCurtin, UL.

  24. Thank you dominika.lisiecka@ul.ie

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