Problems with Eating and Drinking in Parkinson’s Disease
Problems with eating and drinking in Parkinson’s disease are caused either by difﬁculties in swallowing or in the practicalities of eating and drinking (e.g. difﬁculties in getting the food up to the mouth or balancing a cup to drink or tiredness at meal times). There are ways around these problems and professionals who can offer advice and information to help overcome them. It is important to be safe and feel safe when eating and drinking and problems with eating and drinking need to be dealt with.
Impact of swallowing problems on eating and drinking
People with swallowing problems may:
− Eat less than normal and lose weight, potentially resulting in malnutrition and increased susceptibility to infections.
− Drink less than normal, resulting in constipation and dehydration.
− Complain of food sticking in their throat.
− May stop breathing due to food blocking their airway (also known as asphyxiation);
− May suffer from pneumonia caused by food, liquid or infected secretions from the mouth going into the lungs rather than the stomach.
− Become anxious about swallowing anything for fear of choking.
− May not enjoy eating.
− Find that frequent or repetitive swallowing (swallow rehearsals) while eating uses up the saliva needed to ease food into the throat and through to the stomach resulting in very painful dry swallows.
− Find that some of the drugs used to treat Parkinson’s can alter their sense of taste or cause excessive dryness resulting in insufﬁcient production of saliva to facilitate swallowing.
− May be self-conscious that others are worried about them choking and what to do if this happens.
− Feel embarrassed or even experience panic or anxiety attacks before mealtimes.
− Find the drooling or dribbling too embarrassing and choose to eat alone.
− Worry about any mess caused at mealtimes out in restaurants or with families and friends due to being unable to cut up their food or control it on the fork or spoon.
What treatment is available for problems with eating and drinking?
In light of the risks associated with problems with swallowing and eating and drinking, it is important that people experiencing difﬁculties swallowing alert their doctor and seek a referral to a dysphagia-trained Speech and Language Therapist. See the Parkinson’s Association’s Information Sheet on Problems with Swallowing in Parkinson’s Disease for further information on help with dealing with swallowing problems in Parkinson’s.
Dieticians can offer advice on the best types of food to help people who have swallowing difﬁculties. They can also advise on ways of avoiding malnutrition, which may involve the prescription of special nutritional supplements.
The Parkinson’s Association’s Information Sheet on Diet and Nutrition in Parkinson’s disease has more information on diet.
Referrals to a state registered dietician working in the HSE can be obtained from a doctor or consultant. Self-referral to see a dietician privately is also possible. Details of dieticians with private practices can be obtained from the Irish Nutrition and Dietetic Institute.
Occupational Therapists can provide advice on equipment or techniques to make eating and drinking easier. Referral to an Occupational Therapist is either via the GP, consultant, Parkinson’s Disease Nurse Specialist or Public Health Nurse. Self-referral to a private Occupational Therapist is also possible. Details of Occupational Therapists with private practices can be obtained from the Association of Occupational Therapists in Ireland.
If it is decided to seek assistance from any of the specialist therapists listed in this Information Sheet privately, the person with Parkinson’s will have to pay for this private treatment. However, there may be some reimbursement for such therapies under private health insurance schemes. Check individual policies for speciﬁc reimbursement entitlements. Tax relief may be obtained on specialist therapy fees (see current revenue guidelines for applicable threshold and rates).
What will the treatment of problems with eating and drinking involve?
Treatment might include:
− Making the person with Parkinson’s and their family more aware of their particular swallowing difﬁculties. Sometimes neither the person with Parkinson’s nor their families realise that swallowing problems are the reason why mealtimes are so difﬁcult. By helping them to understand and giving them advice on what to do to help, anxiety is reduced and they can all work together to make meal times more enjoyable;
− Adjustments to the person’s posture may be suggested for when eating or drinking. For example:
− Before swallowing, lower the chin towards the chest as this helps to reduce the likelihood of food or drink going down the wrong way and into the lungs.
− Never swallow with the head tilted backwards.
− Exercises to strengthen the lip, tongue and throat muscles.
− Modiﬁcations to the diet to make foods and liquids easier and safer to swallow e.g. avoiding hard, dry or crumbly foods such as biscuits.
− Drinking very cold ﬂuids ﬁrst thing before breakfast or with a meal to stimulate a swallow.
− Drinking thicker drinks which move more slowly and may therefore be easier to control. Powdered thickeners are available on prescription, as are pre-thickened juices and milk. However, a Speech and Language Therapist or dysphagia-trained nurse would need to advise on the level of thickness required for drinks;
− Liaising with the medical team to ensure timing of medications allows optimal swallow function at mealtimes.
Using these and other techniques, the therapist can limit the risk of choking and make swallowing less difﬁcult and more comfortable.
For some people, the solutions to swallowing problems described above are not enough and some people may be advised to use an alternative feeding method. These may include feeding through the nose (nasogastric feeding) or with a tube directly into the stomach (gastrostomy feeding).
Self-help for Problems with eating and drinking?
The following procedure may help when swallowing food or drink:
− Never swallow with the head tilted backwards. Some people ﬁnd it helpful when drinking to reﬁll the cup or glass when it is half empty so as not to have to tilt the head back to drink.
− Take plenty of time when having food and/or ﬂuids- never hurry.
− Remember to take small mouthfuls.
− Drink plenty of ﬂuids to avoid the effects of dehydration.
In addition, families and friends should:
− Consider explaining to others, including children, why there are problems with eating and drinking in Parkinson’s as this can make mealtime less distressing for everyone, thus eliminating the possibility of the person with Parkinson’s eating alone out of embarrassment.
− Provide support, time and understanding for the person with Parkinson’s to eat safely.
Parkinson’s Association of Ireland would like to thank Parkinson’s UK for permission to use PDS Leaﬂet FS22 and PDS Leaﬂet FS07 as the basis for this Information Sheet.
Also, our thanks to Aisling Keogh, Speech and Language Therapist, Speech Matters SLT Clinic for endorsing this leaﬂet.
Other Relevant Information Sheets:
EX2: Physiotherapy and Parkinson’s Disease
Irish Association of Speech and Language Therapists (IASLT)
P.O. Box 541, Ballinlough, Co. Cork Telephone: +353 (0)85 7068707
E-mail: email@example.com • Website: www.iaslt.ie/
Irish Association of Speech and Language Therapists in Private Practice (IASLTPP)
PO Box 11074, Dublin 9.
Telephone: 01 8787959 Website: www.iasltpp.com
Irish Nutrition & Dietetic Institute (INDI)
Ashgrove House, Kill Avenue, Dun Laoghaire, Co. Dublin Telephone: 01-2804839 • Fax: 01-2892353
Email: firstname.lastname@example.org • Website: http://www.indi.ie
Association of Occupational Therapists of Ireland
PO Box 11555, Ground Floor Ofﬁce, Bow Bridge House, Bow Lane, Kilmainham, Dublin 8 Telephone: 01 6337222
Email – email@example.com • Website: www.aoti.ie
Irish Society of Chartered Physiotherapists (ISCP).
Royal College of Surgeons, 123, St. Stephen’s Green, Dublin 2. Telephone: +353 1 402 2148 • Fax: +353 1 402 2160