disabilities?
Studies have consistently reported that people with learning disabilities have low activity levels.4, 6, 30, 45, 54
Why are people with learning disabilities often inactive?
Physical disabilities and illnesses can create extra obstacles to exercising at all ages. Among younger people with learning disabilities there is an increased risk of epilepsy, sensory disorders, underweight and overweight, congential heart disorders and neurological problems, all of which can be barriers to exercise.56Among older people with learning
disabilities, impaired mobility, respiratory problems, arthritis, deafness and heart disease are common health problems that will impact on physical activity.57Adults with
learning disabilities are often prevented from being physically active due to financial difficulties, transport barriers or a shortage of staff.58People with learning
disabilities in residential care may have even more limited opportunities for community leisure or to be active as part of tasks of daily life or employment.59Secondary attitudinal
barriers may also impact on the activity patterns of people with learning disabilities. Individuals may be less motivated themselves, they may be less encouraged to be active, may have overprotective family, friends and support staff, and staff in leisure facilities may not be aware of the age- appropriateness or safety of different forms of activity.60
Perceived barriers to being active reported by people with learning disabilities include:61
• Insufficient support staff and resources to enable physical activity
• Location, availability and accessibility of leisure services • Personal finance and budgeting
• Lack of choice and autonomy • Lack of time
• Poor weather conditions preventing outdoor activities • Perceived safety of local environment
• Concern over injury or health problems made worse by activity
• Overprotection and negative attitudes to activity by support staff.
Work and activity
In a survey of adults with learning disabilities in England carried out in 2003/04, only 17% had paid employment and another 6% had unpaid work.62
Increased work activity may help to increase activity levels, as may involvement in community activities or volunteering activities where
Activities might include specific mobility, stretching and strengthening exercises. Postural awareness, balance and coordination are important considerations.
Appropriate medical advice should always be sought before a person with learning disabilities begins an exercise programme.
There is evidence that health practitioner input with people with learning disabilities can significantly improve activity levels and reduce levels of obesity.60Home-based
programmes are an important option and can supplement other activities. Home-based programmes should be self- determined but are more effective when they are tailored to the person, when someone acts as a supporter and when they are preceded by an initial introductory and training phase.67 People with learning disabilities may find
activity more enjoyable if they do this with others, and support staff should consider taking part in activities with service users wherever possible.
Eating after activity
It is common for people to over-eat after they have exercised as they believe that activity burns up a significant number of calories. While being active is important for those who want to maintain their weight or lose weight, it is important that the amount of calories burnt is kept in perspective. Encourage those who have done exercise to drink water rather than sweetened drinks or sports drinks, and avoid additional snacks other than fresh fruit after activity unless these have been specifically recommended by a health professional or there is concern about underweight or excessive weight loss.
Undernutrition
● It is important that children, young people and adults with learning disabilities are offered a good variety of foods that they will accept and which ensure their nutritional needs are met. Where people with learning disabilities have small appetites or eating difficulties, it may be difficult for them to eat enough food to obtain all the nutrients they need. Support staff therefore need to be aware of the importance of adopting strategies to encourage sufficient food intake.
● It is essential that all those who support people with learning disabilities are alert to undernutrition and are trained to spot the signs that food intake is inadequate as soon as possible and to take appropriate action by informing the person’s medical practitioner.
Healthy body weight
● Support staff should be able to monitor weight change easily and to act on changes appropriately. All residential settings should have weighing scales, preferably sitting scales, for monthly weight checks. The scales should be checked appropriately. Support staff should be shown how to act on the weight data recorded, and there should be an appropriate chart in each person’s care plan which highlights when action is needed because of significant weight change.
● Challenging the perception of what are normal body weights for children, young people and adults with learning disabilities is essential. It is important that health professionals are given clear information on the growth and development that should be expected among people with learning disabilities and on the importance of intervention if an individual is below or above a healthy body weight for their height.
● Where weight gain is rapid and avoidable, or where someone is very heavy for their height and where a careful assessment has been made by a dietitian or medical practitioner that weight maintenance or weight loss would be beneficial, individuals with learning disabilities should be supported to reduce the amount of calories they eat and to be more active.
Physical activity
● Everyone should be as active as possible as physical activity builds muscle strength and overall fitness, encourages better mobility and balance, increases appetite and burns up calories. Activity also helps prevent constipation, coronary heart disease and osteoporosis, and has been associated with better mental health.
● Where practical, children and young people with learning disabilities should be encouraged to do moderate- intensity activity – for example, playing with their friends in a playground, swimming or playing football – for at least an hour a day. Adults should aim to do, or build up to, at least 30 minutes’ moderate-intensity activity a day on at least five days of the week.
● Where people with learning disabilities also have physical disabilities which make movement difficult, it is important that they are given as much help as possible to be as active as they can be, even if this involves only very limited chair-based movement.
● People with learning disabilities may find activity more enjoyable if they do this with others, and support staff should consider taking part in activities with service users wherever possible.
Nutrition support
● People who receive some or all of their nutrients through a naso-gastric or gastrostomy tube will often rely on support staff to help manage their artificial nutrition support, ideally with back-up from a dietitian or nutrition support nurse. Training should always be given so that support staff know how to manage tube feeding and solve any practical problems people may have.
References
1 Available from Harlow Printing. See www.healthforallchildren.co.uk 2 World Health Organization Expert Committee (1995)Physical Status:
The Use and Interpretation of Anthropometry. WHO Technical Report Series Number 854. Geneva: WHO
3 National Institute for Health and Clinical Excellence (NICE) (2006) Obesity: The Prevention, Identification, Assessment and Management of Overweight and Obesity in Adults and Children. London: NICE 4 Melville CA, Cooper SA, McGrother CW et al (2005) Obesity in adults
with Down Syndrome: a case-control study. Journal of Intellectual Disability Research; 49 (2): 125-133
5 Medlen J (1997) Weight management in Down Syndrome. Disability Solutions; 2 (4): 10-13
6 Emerson E (2005) Underweight, obesity and exercise among adults with intellectual disabilities in supported accommodation in Northern England. Journal of Intellectual Disability Research; 49 (2): 134-143 7 Mental Health Group, The British Dietetic Association. 2006.
Professional Consensus Statement. The Nutritional Care of Adults with a Learning Disability in Care Settings. London: BDA
8 British Association for Parenteral and Enteral Nutrition (BAPEN) (2003) Malnutrition Universal Screening Tool (MUST Tool). Redditch: BAPEN. www.bapen.org.uk
9 Gravestock S (2000) Review. Eating disorders in adults with intellectual disability.Journal of Intellectual Disability Research; 44 (6): 625-637 10 Stewart L (2003) Development of the nutrition and swallowing
checklist: a screening tool for nutrition risk and swallowing risk in people with intellectual disability. Journal of Intellectual and Developmental Disability; 28: 171-187
11 World Health Organization (2002) The World Health Report 2002: Reducing Risks, Promoting Healthy Life. Geneva: WHO
12 Rabenack I, McCullough LB and Wray NP (1997) Ethically justified, clinically comprehensive guidelines for percutaneous endoscopic tube placement. The Lancet; 349: 496-498
13 Sullivan PB, Juszczak E, Bachlet AME et al (2005) Gastrostomy tube feeding in children with cerebral palsy: a prospective longitudinal study.Developmental Medicine and Child Neurology; 47: 77-85 14 Dharmarajan TS, Unnikrishnan D and Pitchumoni CS (2001)
Percutaneous endoscopic gastrostomy and outcome in dementia. American Journal of Gastroenterology; 96 (9): 2556-63
15 Swaroop VS and Bergstrom LR (2003) Percutaneous endoscopic gastrostomy in clients with dementia. American Journal of Gastroenterology; 98 (8): 1904
16 Murphy LM and Lipman TO (2003) Percutaneous endoscopic gastrostomy does not prolong survival in clients with dementia. Archives of Internal Medicine; 163 (11): 1351-53
17 Sanders DS, Carter MJ, D'Silva J et al (2000) Survival analysis in percutaneous endoscopic gastrostomy feeding: a worse outcome in clients with dementia. American Journal of Gastroenterology; 95 (6): 1472-75
18 Abuksis G, Mor M, Segal N et al (2000) Percutaneous endoscopic gastrostomy: high mortality rates in hospitalized clients.American Journal of Gastroenterology; 95 (1): 128-32
19 Hoffer LJ (2006) Tube feeding in advanced dementia: the metabolic perspective. British Medical Journal; 333: 1214-15
20 Priefer BA and Robbins JA (1997) Eating changes in mild-stage Alzheimer’s disease: a pilot study.Dysphagia; 12: 212-221 21 McHorney CA, Bricker DE, Kramer AE et al (2000) The SWAL-QOL
outcomes tool for oropharyngeal dysphagia in adults: i. Conceptual foundation and item development. Dysphagia; 15: 115-21
22 Nair S, Hertan H and Pitchumoni CS (2000) Hypoalbuminemia is a poor predictor of survival after percutaneous endoscopic gastrostomy in elderly clients with dementia. American Journal of Gastroenterology; 95 (1): 133-136
23 Kraft MD, Btaiche IF and Sacks GS (2005) Review of the refeeding syndrome. Nutrition in Clinical Practice; 20 (6): 625-33
24 Sleigh G and Brocklehurst P (2004) Gastrostomy feeing in cerebral palsy: a systematic review. Archives of Disease in Childhood; 89: 534- 539
25 Sullivan PB, Morrice JS, Vernon-Roberts A et al (2006) Does gastrostomy tube feeding in children with cerebral palsy increase the risk of respiratory morbidity? Archives of Disease in Childhood; 91: 478-482 26 Herrington P, Assey J, Rouse L et al (2001) Gastrostomy and children: a
review of the literature in learning disabilities. Children and Society; 15: 375-386
27 Learning Disability Practice (2006) News: PEG feeding can lead to children being shunned. Learning Disability Practice; 9: 4 28 Department of Health (2005) Choosing Health? Choosing a Better
Diet. London: TSO
29 Department of Health (2004) Choosing Health: Making Healthy Choices Easier. London: TSO
30 Robertson J, Emerson E, Gregory N et al (2000) Lifestyle-related risk factors for poor health in residential settings for people with
intellectual disabilities. Research in Developmental Disabilities; 21: 469- 486
31 McGuire BE, Daly P and Smyth F (2007) Lifestyle and health behaviours of adults with an intellectual disability. Journal of Intellectual Disability Research; 51: 497-510
32 Slevin E, McConkey R, Truesdale-Kennedy M et al (2008) Prevalence, determination and strategies for countering overweight and obesity in school aged children and adolescents: a comparison of learning disabled and non-learning disabled pupils. University of Ulster. (Research study due to be completed in May 2008.)
33 Allison DB, Packer-Munter W, Pietrobelli A et al (1998) Obesity and developmental disabilities: pathogenesis and treatment. Journal of Developmental and Physical Disabilities; 39: 437-441
34 Prasher VP (1995) Overweight and obesity among Down’s syndrome adults. Journal of Intellectual Disability Research; 39: 437-441 35 Melville CA, Hamilton S, Hankey CR et al (2007) The prevalence and
determinants of obesity in adults with intellectual disabilities. Obesity Reviews; 8: 223-230
36 Clegg J, Sheard C and Cahill J (2001) Severe intellectual disability and transition to adulthood. British Journal of Medical Psychology; 74: 151- 166
37 Gravestock S (2007) Greenwich Eating Disorders in Adults with Learning Disabilities project. Personal communication.
38 Emerson E and Hatton C (2007) The Mental Health of Children and Adolescents with Learning Disabilities in Britain. London: Foundation for People with Learning Disabilities
39 Department of Health (1999) Government Action to Tackle Rising Levels of Obesity. London: HMSO
40 World Health Organization (1997) Obesity: Preventing and Managing the Global Epidemic. Geneva: WHO
41 Ludwig DS, Peterson KE and Gortmaker SL (2001) Relation between consumption of sugar-sweetened drinks and childhood obesity: a prospective, observational analysis. The Lancet; 357: 505-508 42 Hill JO and Peters JC (1998) Environmental contributions to the obesity
epidemic. Science; 280 (5368): 1371-1374
43 Elo-Martin JA, Ledikwe JH and Rolls BJ (2005) The influence of food portion size and energy density on energy intake: implications for weight management.American Journal of Clinical Nutrition; 82 (suppl) 236S-241S
44 Foetal Alcohol Syndrome Aware (2002) FAS statistics comparison for UK. http://www.fasstar.com/UK/
45 Turner S and Moss S (1996) The health needs of adults with learning disabilities and the Health of the Nation strategy. Journal of Intellectual Disability Research; 40 (5): 438-450
46 Stewart L and Beange H (1994) A survey of dietary problems of adults with learning difficulties in the community. Mental Handicap Research; 7 (1): 41-50
47 British Nutrition Foundation (1999) Obesity. The Report of the British Nutrition Foundation Task Force. Oxford: Blackwell Science 48 Department of Health (2005) Diabetes.
http://www.dh.gov.uk/PolicyAndGuidance/HealthAndSocialCareTopics/D iabetes/fs/en
49 Disability Rights Commision (2006) Health Inequalities Formal Investigation. Equal treatment investigations. http://www.drc-gb.org 50 Diabetes UK (2005) Diabetes – the complications.
http://www.diabetes.org.uk/risk/index.html
51 Hamilton S, Hankey CR, Miller S et al (2007) A review of weight loss interventions for adults with intellectual disabilities. Obesity Reviews; 8: 339-345
52 Lunsky Y, Stiko A and Armstrong S (2003) Women be healthy: evaluation of a women’s health curriculum for women with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities; 16: 247-254
53 Golden E and Hatcher J (1997) Nutrition knowledge and obesity of adults in community residences. Mental Retardation; 35: 177-184 54 Department of Health (2004) At Least Five a Week: Evidence of the
Impact of Physical Activity and its Relationship to Health. A Report from the Chief Medical Officer. London: Department of Health 55 Stathopoulou G, Powers M, Berry A et al (2006) Exercise interventions
for mental health: a quantitative and qualitative review. Clinical Psychology: Science and Practice; 13 (2): 179-193
56 Van Schrojenstein Lantman-de Valk HMJ, Van den Akker M, Maaskant MA et al (1997) Prevalence and incidence of health problems in people with intellectual disability. Journal of Intellectual and Developmental Disability; 41: 42-51
57 Cooper SA (1998) Clinical study of the effects of age on the physical health of adults with mental retardation. American Journal on Mental Retardation; 102: 582-589
58 Pitetiti KH, Rimmer JH and Fernhall B (1993) Physical fitness and adults with metal retardation. An overview of current research and future directions. Sports Medicine; 16: 23-56
59 Messent PR, Cooke CB and Long J (1999) Daily physical activity in adults with mild and moderate learning disabilities: is there enough? Disability and Rehabilitation; 1: 424-427
60 Chapman MJ, Craven MJ and Chadwick DD (2005) Fighting fit? An evaluation of health practitioner input to improve healthy living and reduce obesity for adults with learning disabilities. Journal of Intellectual Disabilities; 9: 131-144
61 Messent PR, Cooke CB and Long J (1999) Primary and secondary barriers to physically active healthy lifestyles for adults with learning disabilities. Disability Rehabilitation; 21: 409-419
62 Emerson E, Malam S, Davies I and Spencer K (2005) Adults with learning difficulties in England 2003/4.
www.ich.nhs.uk/pubs/learndiff2004
63 Prasher VP and Janicki MP (eds) (2002) Physical Health of Adults with Intellectual Disabilities. Oxford: Blackwell Publishing
64 Peran S, Gil JL, Ruiz F and Fernandez-Pastor V (1997) Development of physical response after athletics training in adolescents with Down syndrome. Scandinavian Journal of Medicine and Science in Sports; 7: 283-288
65 Wang WY and Ju YH (2003) Promoting balance and jumping skills in children with Down Syndrome. Perception and Motor Skills; 94: 443- 448
66 Marshall D, McKonkey R and Moore G (2003) Obesity in people with intellectual disabilities: the impact of nurse-led health screenings and health promotion activities. Journal of Advanced Nursing; 41: 147-153 67 Health Education Authority (1997) Guidelines for Promoting Physical
Activity with People with Disabilities. London: HEA. (Available from www.nice.org.uk)