So what are the issues surrounding nutrition and diet for people who have learning disabilities? Many authors have commented upon the need for frequent monitoring of the nutritional status and problems of people with learning disabilities (Dahl et al 1996), and all agree that not enough research has been done in this area. Problems such as being overweight (obese) and underweight due to dysphagia or dependence on carers are common among people who are learning disabled. I will look at each problem individually in order not to confuse the reader.
Some people with a learning disability have a greater chance of becoming overweight/obese. Obesity can be defined as a body mass index (BMI) above thirty (Perry 1996). The incidence of morbid obesity (BMI above 40) is higher in people with learning disabilities than the general public (DoH 1995). The Department of Health’s ‘Health of the Nation’ comments that obesity is being targeted amongst people with learning disabilities in order to prevent heart disease and strokes (DoH 1995). There are medical, dietary, social, environmental and psychological factors that may explain the problem of obesity in learning disabilities.
Prader Willi syndrome can result in gross obesity, due to abnormalities in the mechanisms of appetite control (Perry 1996). The small stature of people with Down syndrome may also cause obesity, as energy needs of smaller people is generally lower due to lower muscle mass (Perry 1996). Dinani and carpenter (1990) point out that hypothyroidism is common in Down syndrome, and if not treated will slow metabolic rate and therefore encourage weight gain. Other medical causes of obesity may be drug side effects. Medication can affect body weight by increasing appetites; anti-epileptics such as sodium valporate and clobazam have this affect (British National Formulary 2001). Some antipsychotics and mood stabilisers, such as diazepam, chlorpromazine and haloperidol, can cause a dry mouth leading to high intakes of drinks containing calories and sugar (Sullivan & Tucker 1999). For further information on the interaction of drugs and body weight see Appendix 1.
For people living in large institutions or units then there may be dietary factors in obesity. Inappropriate menus may be selected by staff/clients due to lack of nutritional knowledge (Perry1996), ritualistic adding of sugar to hot drinks is also common, as to is the use of food, especially sweets, to reward good behaviour or to placate inappropriate behaviours. For those people who have a learning disability, and who live alone in the community then influencing factors such as poor cooking and shopping skills, may lead to an unbalanced diet and limited food range (DoH 1995).
Social activities such as tasting sessions can encourage people to eat outside of mealtimes; certain clients cannot take part in physical activities due to physical disability or through lack of motivation. A lack of suitable staff and equipment may also lead to clients not experiencing enough exercise (Perry 1996). Psychological factors such as boredom may lead to binge eating.
It is important as nurses to help individuals who are overweight because the chances of them developing cardiovascular disease, cancers, gallstones and diabetes are significantly reduced if a healthy weight is attained (Perry 1996). The issue of self-esteem is also important when considering the treatment of obesity (Dorset NHS Trust 1999). Dinani and carpenter (1990) comment that people with learning disabilities are subject to the same pressures to have a ‘perfect’ body as the general population.
At the other end of the scale there are some people with learning disabilities who may be at risk of weight loss, or who may have difficulty in gaining weight. Lee and Nieman (1996) comment that factors leading to malnutrition include, inadequate nutrient intake, nutrient mal-absorption, increased nutrient requirements and inadequate emotional and social nurturing, all of which can be applied to people with learning disabilities living in long-stay environments. Dorset NHS Trust (1999) list the following reasons as to why some clients may become underweight, hyperactivity, behavioural problems such as meal refusal/refusal of certain foods, dysphagia, inappropriate feeding utensils, positioning at mealtimes, depression, and medical problems such as poor dentition.
Dysphagia is a problem experienced by some people who are learning disabled, especially if there is associated cerebral palsy or a history of strokes. Weller (1997) defines dysphagia as difficulty in swallowing. The nurse’s goal in feeding an individual with dysphagia is to maintain or improve nutritional status and to ensure safety during mealtimes (Copeman 1999). Food for individuals with dysphagia needs to be pureed or mashed; this can cause its own problems as Herbert (1996) states adding liquid to foods will reduce nutritional value by 50%, pureed food also looks unappetising and could lead to meal refusal. Therefore meals should be made to look as appetising as possible, thickened using Thickn’Easy, and made as nourishing as possible with the addition of calorie supplements such as Maxijul or Polycal.
Mealtimes can be a distressing time for some people, especially if they have dysphagia or are prone to choking. The distress caused by mealtime may lead behaviours such as meal refusal, in order to avoid the stressful situation. It is vital that staff training and organisation is in place when dealing with clients who are undernourished and present feeding difficulties. Issues such as communication, supervision, patience and positioning need to be addressed in order to benefit the client. Cherney (1994) states the positioning of the body is important while consuming foods and liquids. A sitting up position facilitates a safe and efficient swallow during feeding. Clay (2001) remarks that where possible nurses should sit down while feeding the client so that this is made an enjoyable social occasion.
At the extreme end of the scale there are the people who have no oral feeding. This can arise because a client may not have a swallow reflex, when it is felt by nursing staff that the risk of aspiration with oral feeding is too great, or when oral feeding does not meet the clients’ nutritional requirements. In the case of non-oral feeding then the use of naso-gastric feeding or PEG feeding (percutaneous endoscopic gastrostomy) is usually implemented. PEG feeds are catheter tubes, which are surgically inserted directly into the stomach. Colagiovanni et al (2000) comment food needs to go into the stomach in order the person gets nutrition. By syringing liquidised food through the catheter tube a sufficient nutritional intake is ensured (Roper et al 1990).
Roper et al (1990) suggest that tube feeding minimises the risk of malnutrition. The use of special feeds available on prescription, which are nutritionally complete, ensure the client is receiving the full allowance of nutrients required to maintain body weight and thrive.
A final point must be made as to how certain learning disabilities and conditions arise due to the inability of the person to metabolise certain food elements. Disorders of metabolism lead to the accumulation of by products within the body. Phenylketonuria is the result of the body not being able to metabolise the amino acid (protein) phenylalanine, a significant level of learning disability is associated. The Guthrie Test is carried out on newborns to see if they have this disorder, if it is present then a controlled diet will help prevent the onset of a learning disability. Other examples of metabolic disorders are:
- Tay-Sach’s disease: A lipid (Fat) metabolic error.
- Galactosaemia: A carbohydrate metabolic error.
- Mucopolysaccaridosis e.g. Hunter syndrome, Hurler syndrome, Sanfilippo syndrome and Morquio’s syndrome: A sugar/connective tissue metabolic error.
- Wilson’s disease: A mineral or Electrolyte metabolic error.
It has become apparent to me from doing this learning contract that diet and nutrition is a significant yet much maligned subject within nursing. From the lack of studies and research to the small space given in texts it is obvious that more needs to be done on the role nurses have in their clients nutrition. We as nurses have the greatest contact with our clients; it is our duty to inform them as far as possible about healthy eating, awareness of possible consequences of poor diet and to teach skills such as cooking and shopping. Sullivan and Tucker (1999) comment that the benefits of appropriate nutritional interventions are manifold; they include improved physical and mental health, better compliance and the overall quality of client’s lives.
Whether we are trying to help someone lose weight, or we a working to improve the life of a malnourished client who requires input from various members of the multi-disciplinary team, we must use our skills and those of the individual to achieve the best outcome. Every effort should be made to give the client choice, as long as it is informed, about all possible issues surrounding diet and nutrition.
This learning contract has enabled me to see the importance of diet and of the whole feeding regime. It has shown me that it needs to be looked at on an individual basis and goes beyond the time at the dinner table. Again the need for in-depth accurate assessments of problems or potential problems arises. In all a very worthwhile, informative and enjoyable project to have undertook.
Appendix 1
Relative risk of bodyweight gain associated with psychotropic drugs (Ackerman & Nolan 1998)
Reference List
ACKERMAN, S and NOLAN, L. (1998) Bodyweight Gain Induced by Psychotropic Drugs. CNS Drugs. 9(2), pp.135-151.
BOND, S. (1997) Eating Matters: A Guide for Improving Dietary Care in Hospitals. University of Newcastle.
BRITISH MEDICAL ASSOCIATION and ROYAL PHARMACEUTICAL SOCIETY OF GREAT BRITAIN (2001) British National Formulary. London: BMJ Books.
CHERNEY, L. R. (1994) Clinical Management of Dysphagia in Adults and Children. 2nd ed. Gaithersburg: Aspen Publishers.
CLAY, M. (2001) Nutritious, Enjoyable Food in Nursing Homes. Nursing Standard. 15(19), pp.47-53.
COLAGIOVANNI, L. ARROWSMITH, H. DAVIDSON, A. and ROLLINS, H. (eds.)(2000) Adult Nutritional Support: A Practical Guide for Nurses. Longman Higher Education.
COPEMAN, J. (1999) Nutritional Care for Older People: A guide to Good Practice. London: Age Concern.
DAHL, M., THOMMESEN, M., RASMUSSEN, M. and SELBERG, T. (1996) ‘Feeding and Nutritional Characteristics in Children with Moderate or Severe Cerebral Palsy’. Cited in ALDRIDGE, J., PULLEN, J. and WHELAN, C. (2000) A Survey of the Nutritional Status of Adults and Children Using the Learning Disability Services of a Health Trust. Journal of Learning Disabilities. Jun. 4(2), pp.141-152.
DEPARTMENT OF HEALTH (1995) The Health of the Nation. A Strategy for People with Learning Disabilities. London: HMSO.
DINANI, S. and CARPENTER, S. (1990) Down’s Syndrome and Thyroid Disorder. Journal of Mental Deficiency Research. 34, pp.387-392.
DINSDALE, P. (2000) Food for Thought. Nursing Standard. 14(19), p.12.
DORSET NHS TRUST (1999) Nutrition Facts for Learning Disabilities. Nutrition and Dietetic Services.
HERBERT, M. (1996) Coping with Children’s Feeding Problems and Bedtime. British Psychological Society.
LEE, R. D. and NIEMAN, D. C. (1996) Nutritional Assessment. 2nd Edition. Boston: McGraw-Hill.
LEMAY, A. (1996) Nutrition. Cited in CLAY, M. (2001) Nutritious, Enjoyable Food in Nursing Homes. Nursing Standard. 15(19), pp.47-53.
PERRY, M. (1996) Treating Obesity in People with Learning Disabilities. Nursing Times. 28Aug. 92(35), pp.36-38.
ROPER, N. LOGAN, W.W. and TIERNEY, A. J. (1990) The Elements of Nursing Based on a Model of Living. 3rd ed. Edinburgh: Churchill Livingstone.
SULLIVAN, A. and TUCKER, R. (1999) Meeting the Nutritional Needs of People with Mental Health Problems. Nursing Standard. 13(47), pp.48-53.
WELLER (2000) Bailliere’s Nurses Dictionary. 23rd ed. Mosby