The Mentally Disabled - a responsibility and a challenge
M L Marais, D Labadarios
Department of Human Nutrition University of Stellenbosch
Tygerberg, W Cape

S A J Clin Nutr 2000 Nov Vol 13 No 4

The nutritional status and requirements of mentally disabled persons is a largely neglected area of knowledge and research in the field of nutrition. Globally, however, severely disabled children are known to be at high risk for developing malnutrition, which may partly explain the growth retardation often encountered in such children and associated complications experienced in later life as adults.1 The spectrum of malnutrition ranges from a 43% prevalence of undernutrition among moderately or severely disabled children with cerebral palsy (displegia, dystonia, tetraplegia, ataxia) to a 3% prevalence of overnutrition compared with reference values for healthy children. Severely disabled children in the younger age groups are reported to be at the greatest risk for poor nutritional status. Early identification of children at risk requires the regular assessment of their ability to feed and of their nutritional status.2,3 Although subnormal growth hormone secretion and recurrent chest infections are also known to play a role in poor growth velocity,4,5 the possibility remains that children who are underweight can achieve catch-up growth after timeous and appropriate intervention.1 In the absence of such interventions, growth potential and nutritional status are known to deteriorate, as exemplified for instance by cerebral palsied children, who were found to be 5% shorter than healthy children at 2 years of age and more than 10% shorter at 8 years of age.6

The most common factors contributing to the nutritional disorders seen in these individuals include:

• inadequate nutrient intake due to poor feeding techniques; gross motor/self-feeding impairment; swallowing difficulties; regurgitation; gastro-oesophageal reflux; limited appetite; food aversions and food refusal; coughing, choking or vomiting during eating4,7
• obesity and low activity level
• constipation
• nutrient-drug interactions and allergies.4

The paucity of such data in South Africa is also of concern in terms of formulating a nutritional policy for this segment of the population. In one recent study which focused on the nutritional status of a group of 400 mentally disabled children, 47% were found to be severely (< 60th percentile of weight for height) and 10% moderately malnourished. The presence of chronic energy deficiency was proposed since 71% of the study population had a body mass index (BMI) of < 20.8 The article by Molteno et al. on p. 145 of this issue of the SAJCN (reprinted from the SAMJ9) reports on the nutritional status of patients in a long-stay hospital in South Africa10 and provides additional and much-needed information on this segment of the population. In essence, it confirms previous findings and underscores the urgent need to formulate a national policy for the nutritional rehabilitation of such individuals.

It has been postulated that mentally disabled children and adolescents who receive comprehensive interdisciplinary nutritional services, can be adequately nourished and have a nutrient intake that meets their nutrient requirements.10 This can be achieved by the appropriate management of food avoidance behaviour, which is designed to make the eating process enjoyable and nutritionally adequate.11 A number of alternative feeding practices are available and should be considered, including prolonged assisted feeding, use of pureed foods, nasogastric tube feeding or surgical techniques such as percutaneous endoscopic gastrostomy (PEG).12,13 In order to minimise socially related problems for the child in later life, transition from tube feeding to oral feeding should be introduced in a four-step transition process (establish a positive feeding relationship between caregiver and child; determine feeding readiness; normalise feeding and initiate a behavioural feeding plan) to maximise successful oral feeding of a formerly tube-fed child.14

Despite the availability of these techniques for the improvement of nutritional status of these individuals, however, the assessment of their nutritional status presents a difficult diagnostic and care challenge. There are, for instance, inadequate standards with which to compare growth and adequacy of nutrient intake for this segment of the population. Optimal energy requirements are also difficult to define. For instance, no correlation has been found between energy intake and ambulatory status, degree of mental handicap, level of drug usage, BMI, body weight, fat mass and percentage body fat.15,16 The high degree of variability in total energy expenditure (TEE) in these individuals, which has been largely attributed to the high inter-individual variation in energy expended in physical activity, makes it difficult to provide general guidelines for energy requirements for adults with cerebral palsy.

Additionally, athetotic movement may increase energy requirements by 14%.16,17 Furthermore, children and adolescents who have growth parameters consistently below norms require frequent assessment and constant monitoring to detect feeding difficulties and dietary intake changes as well as to provide early intervention to help prevent the adverse consequences of dehydration, protein-energy malnutrition, decubitus ulcers and altered bowel motility, as well as the increased prevalence and duration of infections.2,18 In this regard, severe malnourishment among mentally disabled adults with swallowing difficulties and recurrent food aspiration is known to be associated with a high incidence of co-occuring gastro-intestinal and respiratory disorders.19 Autopsies on such individuals have shown that the most common cause of death is respiratory disease, followed by cardiovascular disease.15,18,20

Another major challenge in the appropriate management of these individuals is the place of care. Traditionally, mentally disabled persons residing in institutions were totally dependent on their caregivers for their nutrient intake and their quality of life. The role of institutions in the care of mentally disabled persons has come into question recently and the size of the institutionalised population has been drastically reduced. The trend that has developed is for mentally disabled persons to be discharged and to remain in highly supported settings in the community.21 These community-based mental health systems of care for mentally disabled persons and their families involve innovative approaches to improve access, utilisation, financing, clinical efficacy and cost-effectiveness of mental health services provided within the context of their home communities.22

This trend has recently been evaluated in more than 2 000 individuals in California. After transfer from institutions into the community, risk-adjusted odds for mortality in adults was estimated to be between 72% (1980 -1992)23 and 67% (1993 - 1997)24 higher in the community than in institutions. In the case of children with severe mental retardation and a fragile medical condition, the consequences of the current trend toward de- institutionalisation were reduced mobility, reduced use of tube feeding and an associated risk- adjusted 25% increase in mortality rate.

There exists, therefore, a need to ensure continuous, consistent and competent medical care and supervision in the community, and it is imperative to weigh such considerations for an individual when making choices between institutional versus community-based care.23-27 Nevertheless, and although there seems to be some resistance to the establishment of group homes for mentally disabled adults,28 the benefit of successful placement would appear to be invaluable, since some follow up studies have reported that some individuals did not have any major problems with daily living skills, and serious behaviour problems were uncommon. These individuals were more satisfied with their new homes, and felt happier, healthier and more independent since their discharge.21 They also expressed satisfaction with their present environment and had no desire to return to the institution. Community adjustment of mentally disabled persons regarding daily living skills remained unchanged, being average in level of performance and requiring an average amount of supervision. These gains, however, have to be considered in the light of the additional burden placed upon the care infrastructure as highlighted by an increased use of primary care and expert psychiatric service needed following resettlement in the community.29,30 The additional training needs created by such de-institutionalisation included:

• training of basic teaching skills, behavioural training and self-management skills to support staff31,32
• help and advice to staff involved in nutrition and care of persons with feeding problems
• emotional support for the staff in the form of team-building skills33
• food safety training: safe food storage, preparation and handling procedures34
• training on nutritional practices (menu development, meal preparation).35

Recent findings appear to indicate that there will always be a need for psychiatric mentally disabled individuals to be institutionalised at an estimated 30 psychiatric mentally disabled beds per 100 000 population.36 These patients are totally dependent on the skills, knowledge and dedication of their caregivers for their quality of life. For the remainder of such individuals, there remains an urgent need for continued research that addresses the definition and creation of adequate standards regarding the best place for their care. In conclusion, there is at present no perfect solution to the many difficulties in providing optimal care to mentally disabled persons. In the interim, however, the golden rule of avoiding and preventing the potential and actual detrimental effects of malnutrition by providing an optimal diet must be one of the major considerations in their care. We remain dependent, however, on further research in this field and a national policy that will help improve their overall care and management.

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Last updated: 17-Feb-2004