Do you have eating, drinking or swallowing difficulties? Advice for people living with swallowing difficulties (Dysphagia) and their carers 2 Hello... Mid & East Antrim Agewell Partnership (MEAAP) is a local inter-agency partnership aimed at improving the lives of Older People aged 50 years and over, living in the Ballymena, Larne & Carrickfergus areas. In 2020, MEAAP partnered with the Northern Health & Social Care Trust (NHSCT), in The Community Foundation Northern Ireland (CFNI)’s Community Innovators Programme, funded by the Hospital Saturday Fund and the Department for Communities. The team’s aim was to support those living with swallowing difficulties in the community to better self-care. The result of this process is ‘Hard to Swallow’, a self-help booklet and campaign, designed in partnership with local Older People, health charities and Health & Social Care professionals. Its aim is to support our community and raise awareness of swallowing difficulties. The information in this booklet has been compiled with support Members of the ‘Hard to Swallow’ team from from the NHSCT. MEAAP & NHSCT at the Community Innovators workshops in February 2020. Mid & East Antrim Agewell Partnership - Your local older people’s charity Contents 3 What is Dysphagia? Pg 4 Why does it happen? Pg 5 What are the signs of Dysphagia? Pg 6 What problems can Dysphagia lead to? Pg 7 Who do I talk to? Pg 8 Making the most of mealtimes Pg 9 - 13 What else can I do? Pg 14 - 15 Other tips Pg 16 Eating out Pg 17 What can I do if I have difficulty swallowing Pg 18 medication? How can I keep my mouth clean if I have swallowing difficulties? Pg 19 What should I do if someone is choking? Pg 20 Where can I find more information? Pg 21 Useful Contact Information Pg 22 Mid & East Antrim Agewell Partnership - Your local older people’s charity 4 What is Dysphagia? Dysphagia (pronounced dys – fay – juh) is the medical term used when a person has difficulty eating, drinking or swallowing. Difficulties with eating, drinking or swallowing can affect people at any stage in life. Some people with dysphagia have problems swallowing certain foods or liquids, while others cannot swallow at all. Dysphagia can improve, remain the same or get worse over time, depending on the cause. Research has shown that 16 – 23% of the general population have difficulties eating, drinking or swallowing, Nasal rising to 27% of those Cavity over 76 years. Mid & East Antrim Agewell Partnership - Your local older people’s charity Why does it happen? 5 Dysphagia can affect a wide variety of people and can occur as result of aging, frailty or following recovery from an illness. Some medical conditions can cause dysphagia e.g. conditions which affect the nervous system such as dementia, stroke, head injury, Parkinson’s disease, multiple sclerosis and motor neurone disease. People with other conditions such as head and neck cancer, cerebral palsy, learning disabilities and some mental health conditions may also experience dysphagia. Mid & East Antrim Agewell Partnership - Your local older people’s charity 6 What are the signs of dysphagia? You may notice one or more of the following signs: • Coughing or choking during or after meals or drinks* • Frequent chest infections – not accompanied by symptoms of the cold* • Change in voice quality during or after eating and drinking – e.g. ‘gurgly’ or wet sounding voice* • Change in breathing when eating and drinking e.g. wheezy, shortness of breath or gasping for air* • Change of colour in the face when eating or drinking* • Pieces of food found inside the person’s mouth after eating* • High risk behaviours when eating and drinking e.g. cramming food in the mouth, not chewing food, holding food in the mouth, eating or drinking very quickly* • Difficulty controlling food or liquid in the mouth • A person reporting pain when swallowing or increased swallowing difficulties • Difficulty managing own saliva * Text adapted with permission from the Public Health Agency Mid & East Antrim Agewell Partnership - Your local older people’s charity What problems can 7 Dysphagia lead to? The serious physical health risks and complications of dysphagia include: • Increased risk of choking • Aspiration (when food, fluid or other material go into the lungs, which can lead to chest infections or aspiration pneumonia) • Dehydration from drinking less • Increased risk of other infections such as urinary tract infections • Poor nutrition from eating less, which may lead to weight loss • Loss of dignity, independence and potential for social isolation • Admission to hospital or increased time in hospital Dysphagia can also affect your quality of life because it may prevent you from enjoying meals and social occasions. Mid & East Antrim Agewell Partnership - Your local older people’s charity 8 Who do I talk to? It is essential to speak to your GP or another health care professional if you, or someone you care for, is having difficulty swallowing or notice any signs of dysphagia. Your GP may refer you to: A Speech & Language Therapist (SLT) A Speech & Language Therapist assesses eating, drinking and swallowing difficulties and may suggest ways to make food and drinks easier and safer to swallow. This may include advice about: • changing the texture/thickness of food or drinks • certain high risk foods to avoid • swallowing exercises In the Northern Health & Social Care Trust you can also contact the Speech & Language Department directly to ask for advice and discuss whether you might need an assessment (see “useful contact information” Pg. 20). A Dietitian A dietitian can assess diet, nutritional & fluid intake and weight. They can provide you with advice on how to cook and prepare your meals to best meet the eating, drinking and swallowing recommendations made by your SLT. A Specialist Your GP may also refer you to a specialist doctor/consultant e.g. Gastroenterology, ENT (Ear, Nose & Throat) – if further tests are needed. Mid & East Antrim Agewell Partnership - Your local older people’s charity Making the most out of 9 mealtimes The following sections contain some general advice for individuals, and their families, who are experiencing eating, drinking and swallowing difficulties, to help you to ensure you are eating and drinking enough and to make mealtimes more enjoyable. Ensuring a balanced diet Often people find they eat less because they are anxious about choking; therefore, meals can take much longer to eat and are less enjoyable. There may also be certain foods you feel you are unable to eat safely so you may have less variety in your diet. In order to get all the nutrition you need, ensure you eat foods from each of the food groups in the ‘Eatwell Guide’. The Guide shows how much of what we eat should come from each food group to achieve a healthy, balanced diet. The advice in the Guide applies to most healthy adults. Some foods may not be suitable for you personally or you may need to change how they are prepared or cooked before you eat them. A dietitian can give you personalised advice. Older adults should note that weight loss is not a normal part of aging. If you or someone you are caring for is losing weight unintentionally, contact your GP. Mid & East Antrim Agewell Partnership - Your local older people’s charity 10 Eatwell Guide Check the label on packaged foods Use the Eatwell Guide to help you get a balance of healthier and more sustainable food. 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