Obesity in people with intellectual disabilities
Asit Biswas1* FRCPsych, Consultant Psychiatrist; Syeda Shaherbano1 MRCPsych, Specialty Trainee year 5; and Avinash Hiremath1 MRCPsych, Consultant Psychiatrist
*correspondence1 Leicester Frith Hospital, Leicestershire Partnership NHS Trust,Groby Road, Leicester, LE3 9QF. e-mail: firstname.lastname@example.org
Obesity is a serious problem with associated health risks for the general population, with greater prevalence amongst people with intellectual disability, increasing morbidity and mortality. Factors contributing include proportionately high calorific intake, lower physical activity and exercise, greater use of psychotropic medication, limited availability of appropriate community leisure facilities, lack of skilled staff and day services, lack of dietary advice and lifestyle changes and sometimes a genetic predisposition. The main approaches need to tackle the menace of obesity in this population include: balanced dietary intake; increasing energy expenditure; health promotion and health education.
Other important considerations in adults with intellectual disability include assessment of mental capacity of the individual to consent to specific planned interventions and making best interest decisions if the person lacks capacity, and the use of Deprivation of Liberty Safeguards in some cases, under the Mental Capacity Act, 2005.
Consistency of approach with a Multidisciplinary Team (MDT) working together closely with primary care, providing a structure and predictability and effective communication strategies for the level of ability, can help in engaging the individual with intellectual disability for identifying and communicating health risks and in making healthy life-style choices.
Annual health checks are a helpful screening tool, for identification of people at risk of developing obesity, and provision of early interventions to minimise the risks associated with it.
Liaison between primary and secondary care involving MDT approach, including input from Community learning disability nurse, Speech and language therapist, Psychologist and psychiatrist can address obesity and health risks associated with it, thereby reducing mortality and morbidity in people with intellectual disability.
Moreover, a cultural change may be needed in the living environments of people with intellectual disability, for adopting and committing themselves to a healthy life-style by all concerned, be it a family home, a care home, respite or day care that needs to be sustained over time.
Obesity is a major health concern due to its increasing prevalence particularly in people with intellectual disability. There has been a marked increase in the proportion of adults who were obese from 13.2 per cent in 1993 to 26.0 per cent in 2013 for men, and from 16.4 per cent to 23.8 per cent for women. (HSCIC, March 2015). This is a cause of significant concern as obesity in turn increases the attributable risk for diabetes, cancer and cardiovascular disease (Guh et al., 2009). A number of clinical guidelines including the National Institute for Health and Clinical Excellence (NICE, 2014) aim to offer practical recommendations based on the available evidence have been published, with a strong focus on primary care (Mercer, 2009). NICE guidance (2014) recommends taking into consideration specific communication needs and identifying the role of family and carers in supporting individuals with intellectual disabilities, enabling them to make lifestyle changes to prevent obesity. NICE also recommends referral to appropriate services for assessment of underlying causes and for those who have significant comorbidities or complex needs.
People with intellectual disability are more likely to be obese compared to the general population. A report by the Sainsbury’s Centre for Mental Health in 2006 found that the rate of obesity among people with learning disability (LD) was significantly different to those without such a disability (28.3% compared to 20.4%) (Emerson 2006). Yamaki (2005) reported a prevalence of 34.6% between 1997-2000 in a sample of 3,499 non-institutionalized Americans with learning disability. Emerson reported prevalence of 27% in 1,304 residential service users with learning disability in Northern England (Emerson, 2005). Bhaumik et al. (2008) reported higher rates of obesity in people with mild to moderate learning disability compared to people with severe and profound disability. Results of this study suggest that there is a higher prevalence of obesity in females (29%) than in males (15%) with intellectual disability.
Another cross-sectional study suggested a higher prevalence of obesity for people with intellectual disability when compared with the general population. The gender ratio showed that, 39.3 % of women and 27.8% men with intellectual disability were obese compared to 25.1% of women and 22.7% of men in the general population. (Melville, 2008)
There are particular challenges in primary care both in terms of prevention and clinical management of obesity in people with intellectual disabilities. The consequences of obesity are particularly relevant to this group who already experience social and health inequalities (Biswas et al., 2010). It is estimated that people with intellectual disability comprise 2.5% of the UK population (Whitaker, 2004) and less than a quarter of this group are known to local health and social services. The Michael Inquiry (Healthcare for All, 2008) reported several reasons for health inequalities in people with intellectual disabilities. Obesity in people with intellectual disabilities should not be ignored or be dismissed as untreatable. People with learning disabilities have the same right to a healthy weight as the rest of the population (Perry, 1996). Lack of awareness of the health needs of people with intellectual disabilities was noted to be striking in primary care and particularly important since primary care is the single point of access to health promotion and ill health prevention, as well as overall health care provision. The Royal College of General Practitioners (RCGP) has developed comprehensive and practical guidance for annual health checks for people with an intellectual disability (Hoghton, 2010). It is identified in a recent study however, that to ensure equality of treatment for this group, services must be developed specifically for people with learning disability. (Beekan, 2015)
A range of factors and causes has been suggested that are likely to increase the risk of obesity in this group. The higher prevalence of obesity in people with intellectual disabilities is due to a complex mix of behavioural, environmental and biological factors. Women, people with less severe disabilities and those living independently or with less supervision are at increased risk of developing obesity (Bhaumik et al. 2008). Genetic disorders such as Prader-Willi syndrome carry a high risk of severe obesity and it has been estimated that 24–48% of adults with Down’s syndrome are classed as obese. Use of psychotropic medication in adults with intellectual disabilities is considered to be a major cause of weight gain in this particular group. People with learning disabilities are at risk of obesity at an earlier age than the general population and as a consequence are likely to experience obesity-related health problems at an earlier age (Doody, 2012).
Adolfsson et al. (2008) noted in people with learning disability living in the community, a relatively high proportion of caloric intake contributed by: snacking in between meals, diet comprising of high consumption of milk, meat and dense sugary foods, and a low consumption of fruit, vegetable and fibre. Lower physical activity levels have also been reported in this population by Messent et al. (1998). Limited availability of community leisure facilities, staffing shortages and transport limitations, as well as unclear day services and residential home guidelines and participant income/expenditure have been identified as barriers to increased physical activity (Messent et al. ,1999). It has also been proposed that low basal metabolic rate, hypotonia and hypothyroidism may be more prevalent factors in people with learning disability that may result in weight gain (Bhaumik et al., 2008). This study also noted that obesity is associated with living independently, living with family, ability to feed or drink unaided and being female.
In a minority of people with learning disability, the predisposition to obesity may be associated with the cause of learning disability and its behavioural phenotype, for example Down’s syndrome (Henderson et al., 2007) and Prader-Willi syndrome (Cassidy, 1997). It has been reported that 45% of hospitalized patients and 20% of patients in the community with learning disability and mental health problems receive antipsychotic medication (Aschcroft et al., 2001). In individuals taking antipsychotic medication clinically significant weight gain, a range of negative cardiac and ECG changes and the risk of metabolic syndrome have been reported, necessitating the importance of regular health monitoring (Newcomer, 2005).
Obesity is a significant risk factor with regard to future cardiovascular risk. However, research on overall cardiovascular risk in people with intellectual disability is limited. Wallace et al. (2008) in an audit of medical records for 155 adults with learning disability attending a clinic for the elderly in Australia, found that people with learning disability have generally a more favourable cardiovascular risk profile compared to the general population. This included lower prevalence of risk factors such as hypertension, diabetes, smoking, and presence of established cardiovascular disease. Obesity and low physical activity were however more commonly seen in people with learning disability, with 35% of the study sample identified to have obesity. These findings have been replicated in a study by Van den Akker et al. (2006) in 436 residential patients with intellectual disability who had a lower prevalence of cardiovascular disease relative to the Dutch general population. Weight gain and obesity is an issue of concern in adolescents with intellectual disability too, as demonstrated in a Swedish study by Wallen et al. (2009) reporting a higher percentage of fat mass, larger waist circumferences and greater evidence of insulin resistance compared to their adolescent peers. Hill et al. (2003) studied 4,872 people with Down’s syndrome and found significantly higher rates of cardiovascular mortality compared to the general population based on Standardised Mortality Ratios, which were 16.5 and 6.0 respectively.
Levy et al. (2009) examined the impact of obesity on the health states of people with intellectual disability in a quantitative study in the United States. Results showed a direct link between the level of obesity and the presence of other health conditions investigated within the study. Out of the 43% of people that were obese, 35.7% suffered hypercholesterolemia, 25.4% had hypertension, 19.3% displayed frequent behavioural problems and 7.1% had diabetes mellitus.
Interventions in people with intellectual disability and obesity
Unfortunately, the few studies, which have focused on weight loss interventions in people with intellectual disabilities, have tended to be methodologically weak, involving small numbers of subjects and lacking in controls (Hamilton et al., 2007).
Despite some available studies on weight management intervention in people with intellectual disability, long-term data on the sustainability of weight loss is lacking. A search of the literature did not reveal any research into pharmacological or surgical interventions to reduce weight in people with intellectual disability and obesity. The recent British Association of Psychopharmacology (BAP) guidelines on the management of weight gain and cardiovascular risk associated with psychosis and antipsychotic drug treatment have recommended that weight management interventions in people with learning disability should be addressed by a group with specialist expertise in managing people with intellectual disability and the BAP guidelines could be used as a starting point (BAP guidelines 2016).
Chapman et al. conducted two studies, Fighting fit (2005), and a follow-up study, Following up fighting fit (2008). In this study a ‘healthy living coordinator’ (HLC) designed activity programmes, dietary strategies and identifying barriers to leading a healthier lifestyle as part of health promotion. The HLC liaised with support staff, relatives, the patients’ GP and a care manager. They compared the Body Mass Index (BMI) of the input group with that of the non-input group and demonstrated that the input group’s BMI decreased throughout the six years of follow-up, whilst the non-input group had an overall increase in BMI during that time. The small sample sizes of the input (n=33) and comparison group (n=40) may have contributed to an overall lack of significance between the two groups. The studies also were unable to identify which elements of the multifaceted intervention worked well and for which groups of people with learning disability. Another limitation of these two studies was the lack of group randomization.
Hamilton et al. (2007) reviewed interventions for weight loss amongst adults with learning disability and obesity. They noted four key interventional approaches: (i) focused on dietary intake; (ii) physical approaches looking at increasing energy expenditure; (iii) health promotion and health education approaches, (iv) multifaceted approaches incorporating more than one of the above interventions. Each of the above approaches has demonstrated some effectiveness at producing weight loss in the short term in people with intellectual disability and obesity.
Marshall et al. (2003) investigated the impact of nurse-led screenings and health promotion activities for people with learning disabilities. The study was carried out within a clinic run by two registered nurses for all people aged 10 years and over who attended special services within the area of one Health and Social Services Trust in Northern Ireland. Following the screening, participants who had excessive weight were invited to participate in a six-week weight reduction programme. The health promotion classes led to a significant reduction in weight and body mass index scores suggesting that pro-active interventions can be effective for people with intellectual disability.
Healthy eating is an important factor in managing weight and preventing chronic conditions associated with obesity and weight gain. A small study explored the role of paid carers in promoting healthy eating and having to face the dilemma of balancing between residents' right to make unhealthy food choices and carers' "duty of care". This study highlighted that carers are motivated by "best interests", to place boundaries and restrictions on food access and choice, when working with less able residents. It confirms previous studies that increased levels of choice for higher ability residents, often results in less healthy food choices. (Gill et al., 2013).
(Jinks, 2011) carried out an integrated review of the effectiveness of non-surgical, non-pharmaceutical interventions designed to promote weight loss in people with learning disability. This study concluded that nurses who work with clients with learning disabilities have a key role to play in the management of obesity and recommended future research on perceptions of clients and their families and effectiveness of interventions, their costs and sustainability.
(Beekan, 2015) identified the need for services designed to meet weight management needs amongst adults with mild-moderate learning disability. A manualized weight management programme for overweight and obese adults with learning disability (Shape Up-LD) was piloted. A randomised, controlled pilot trial in adults with learning disability (n=50) compared Shape Up-LD to Usual Care. Shape Up-LD involves 12 weekly group sessions led by trained facilitators, including advice on healthy eating, physical activity and behaviour change techniques. Carers of the participants attended sessions and received training on how to support participants. The study concluded that at 3 months, Shape Up-LD participants were 0.34kg lighter than those who had received Usual Care. At 6 months this difference had increased to -0.55kg.
(Flanagan, 2013) conducted a study (MOTIVATE) that demonstrates a role for a well designed, expert led weight management program within the group of patients with learning disability. Adults with a learning disability with a Body Mass Index (BMI) of > 30kg were invited to participate in the Motivate Program (n = 74). The key components of the sessions included eating, activity habits, application of behavioural tools, relapse and maintenance strategies. The program was a combination of 1:1 and bi-weekly group sessions facilitated by trained staff, which ran for 6 months. Participants attended with their main carer. The program showed weight loss of 4% at 6 months, 50% of patients lost > 5%. Mean BMI decreased from 37.83 kg/m to 36.1 kg/m. Weight loss was maintained at 3% 6 months post-program.
Rubbert, 2014, and colleagues ran a body awareness group for people with learning disabilities, taking into consideration behavioral and emotional factors for weight loss strategies. The group ran for 9 weeks, for 2 hours once a week for a small group of people with learning disabilities who were unhappy about being overweight. The group helped the people to develop their understanding of the issue by talking about how they felt about their bodies, their relationship with food (why they struggled to choose healthy food over unhealthy food) and physical eating vs. emotional eating. The results showed that the group members had difficulty distinguishing between physical and emotional signs of hunger; they found it hard to give in to cravings despite having had good understanding of healthy and unhealthy foods and had a negative view of themselves due to their body size. It was suggested that weight loss programs for people with learning disabilities should help people understand the social and emotional factors affecting their eating, as well as addressing self-esteem and body image.
Obesity carries with it many health risks, more so in people with intellectual disability. Lower physical exertion and obesity appear to be the most prominent modifiable risk factors to reduce the risk of cerebrovascular and cardiovascular disease in this group. Effectiveness of interventions that address and decrease the risks from obesity and hence the chances of developing cerebrovascular and cardiovascular disease are limited in this vulnerable group of our society.
Multidisciplinary work with liaison between primary and secondary care, titrated to the needs of the individual with intellectual disability, tend to be effective if planned carefully with the involvement of the patient’s GP, Practice nurse, Dietician, Community learning disability nurse, Speech and language therapist, and necessary Psychology and Psychiatry input from local learning disability services.
A well planned and organized programme (i) focused on dietary intake taking into account the individual’s food preferences; (ii) a personalized physical fitness programme including assessment of risks, for example atlanto-axial instability in people with Down’s syndrome, aiming to increasing energy expenditure; and (iii) health promotion and health education within the culture of the home or residential placement, day centre and respite care that the individual attends is necessary. Moreover, consistency of approach between staff teams in different settings, providing a structure and predictability for individual concerned, particularly in those with autism and intellectual disability, is important. A key aspect is effective use of communication for the level of ability including using British sign language, Makaton or Picture Exchange Communication System (PECS), which can help the individual in making healthy life-style choices, thereby minimizing identified health risks.
Mental Capacity Act and Best Interest Decisions
Another important aspect is that the rights of individuals with learning disability to make choices (Valuing People 2001, Valuing People Now, 2007) including choice of a particular lifestyle needs to be respected and is protected by law. However, carers can face dilemmas with regard to addressing obesity in balancing their ‘responsibility of care’ and protecting the rights of individuals with learning disability to make potentially harmful lifestyle choices; including persistent overeating, consistently choosing unhealthy dietary options, smoking and drinking alcohol. In these circumstances, mental capacity needs to be assessed with regard to each of the identified health risks and specific decisions the individual makes for themselves. If the person lacks the capacity to make a decision relating to a particular life-style choice/s and hence the risk to their health, a best interests decision needs to be taken by stakeholders involved in the care of the individual with learning disability, under the Mental Capacity Act, 2005 (TSO, 2005).
The assessment of capacity and best interests decision-making process needs to be given importance as would for people with intellectual disability and a serious physical health condition (Biswas and Hiremath, 2010).
Access to care at point of need
It is also recognized that in some individuals with intellectual disability both non-cooperation and non-compliance may be a barrier. Some patients with intellectual disability are known to express a fear or dislike for attending hospitals and GP surgeries, a needle phobia preventing blood tests for screening, for example for diabetes, and complying with procedures or use of equipment, for example an electrocardiograph, thereby resulting in non-detection of health problems early and contributing to health inequalities in this population. Community learning disability nurses having received appropriate training play a very important role in management of obesity in terms of identifying those at risk of developing obesity and its associated health related risks by conducting basic health checks including pulse, blood pressure, body mass index and abdominal girth measurements. This involves regular monitoring in close liaison with both primary and secondary care. Nurses could receive training for carrying out phlebotomy for necessary blood tests and do ECG recordings at the patient’s home where the patient may be more comfortable to co-operate with than in a hospital or General Practice setting. The disability rights commission in the document Equal Treatment (Disability Rights Commission, 2006) described barriers to primary care and screening initiatives experienced by people with learning disabilities, suggesting regular health checks to address significant healthcare needs, particularly in relation to cerebrovascular disease and diabetes.
Care Pathways and Intervention Programmes
Care pathways and specific intervention programmes have been developed more so for children with obesity. Pheasant and Enock (2008) have developed a care pathway which is linked in several stages: (i) Identification of obesity; (ii) Assessment and classification of obesity; (iii) 1st line advice including life style assessment by health visitors, registered general nurses, nursery nurses and/or practice nurses and use of behavioural change techniques; (iv) Follow-up monitoring; (v) 2nd line advice coordinated by health visitor/nurse; (vi) 3rd line advice includes Psychology and Dietetic assessment and (vii) 4th Line advice that includes assessment by a Paediatrician. Specific intervention programmes (Table 1) include among others MEND: Mind, Exercise, Nutrition, Do it; Traffic light, Watch IT, Carnegie weight management and Empower programmes. These care pathways could be adapted for children and adults with intellectual disability with obesity.
Annual health checks (GMS contract, 2009) in primary care and more regular monitoring by General Practice Nursing staff in liaison with Community Learning Disability Nursing staff in those identified to be at risk, are important in this group to identify potential problems early. Person Centred Planning (PCPs) for effective interventions, planned and titrated for the individual need to be put in place, in partnership with primary care nurses, community learning disability nurses, secondary care physicians, psychiatrists, dieticians, health and fitness trainers and social services, to minimise the chances of developing obesity and reduce the risk of cardiovascular morbidity. There is a need for methodologically robust studies to investigate further, both the aetiology and management of obesity in this population for prevention and early intervention.
The practice points include (Biswas et al., 2010)
- Effectiveness of interventions that address and decrease the risks from obesity and consequent cerebrovascular and cardiovascular disease are limited in people with learning disability, due to a multitude of factors including non-cooperation and non-compliance.
- Multidisciplinary team working in developing a PCP, titrated to the needs of the individual with learning disability and at risk, planned carefully with the involvement of the patient’s GP, Practice nurse, Dietician, Community learning disability nurse, Speech and language therapist, and necessary Psychology and Psychiatry input from local learning disability services is of key importance.
- There are four key interventional approaches for obesity: (i) focused on dietary intake; (ii) physical approaches looking at increasing energy expenditure; (iii) health promotion and health education approaches; (iv) multifaceted approaches incorporating more than one of the above interventions.
- Effective liaison between General Practice Nurses and Community Learning Disability Nurses are likely to help addressing potential and recognized barriers to screening, monitoring and interventions for obesity in individuals with learning disability.
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This article was published on the website in June 2016.