a survey of dietary problems of adults with learning disabilities in the community

A SURVEY OF DIETARY PROBLEMS OF ADULTS WITH LEARNING DISABILITIES

IN THE COMMUNITY

Lynette Stewart and Helen Beange Health Promotion Unit for the Developmentally Disabled, Level 4,

Vindin House, Royal North Shore Hospital, Pacific Highway, St Leonards, NSW 2065, Australia

Dorothy Mackerras Department of Public Health, A27 Fisher Road, University of Sydney,

NSW 2006, Australia.

Abstract A survey of nutritional status and dietary problems in adults with learning disabilities aged 20-50 years and living in the general community is reported. The frequency of overweight (BMI 25-30) and obese (BMI >30) women (and in Down Syndrome subjects both men and women) was more than twice that in their community controls. No significant difference in BMI categories was found in the men. Hyper- tension and hypercholesterolaemia were more frequent in overweight and obese learning disabled women than in their community counterparts. These results indicate a need for specific nutrition education programmes, in concert with proper nutritional assessment and dietary intervention.

Introduction The nutritional and dietary problems of people with learning disabili-

ties have been mostly studied in institutionalised children (Thommessen & Riis, 1989; Thommessen etal., 1991; Gouge & Ekvall, 1975; Springer, 1987; Rice, 1981). This population tends to be more intellectually and physically disabled than those living in the open community and their nutrition related problems have been well recognised. They include growth retardation, obesity, underweight, drug-induced malnutrition, excessive appetite, anorexia, feeding difficulties and constipation.

Diet and nutrition in adults with learning disabilities (LD) has been studied less often. A high prevalence of obesity has been noted in both insti- tutional and open community based persons with LD. (Burkhart et al . , 1985;

0952-9608/94/010041-10/$01.80/0 MENTAL HANDICAP RESEARCH

@ 1994 L. Stewart, H. Beange & D. Mackerras Vol. 7, No. 1,1994

41

42 MENTAL HANDICAP RESEARCH

Green & McIntosh, 1985; Lindman, 1991; Warpula, 1981; Siddall, 1981; Cunningham et al., 1990). Springer (1987) followed the nutritional status of a group of adults and children who were being moved from an institution to foster-care homes in the community and who had nutrition services as part of their individual programme plan. Generally, improvements in height, weight, triceps skinfold and dietary adequacy and/or biochemical indices were found with the move into the community.

In New South Wales, nutrition services are not an integral part of institu- tional services for the learning disabled and are not usually part of the pro- cess involved in the resettlement of people in the community. People with LD living in the community, theoretically, have access to the same nutrition services as the rest of the community, i.e. consultation with private practice, public hospital or community based dietitians, via referral from medical practitioners, patient families or care workers. There has been only one nutrition and dietetic service specifically for adults with LD, that available through the Health Promotion Unit for the Developmentally Disabled, based at Royal North Shore Hospital in Sydney.

There has been no Australian survey of nutritional status or dietary adequacy of learning disabled people living in institutions or in the general community. We report the results of a survey of nutritional status and dietary problems in learning disabled people living in a community in northern Sydney.

Methods The dietary study group

In 1988,346 adults between the ages of 20 and 50 years with an IQ below 70 were ascertained as living in the Lower North Shore suburbs of Sydney, yielding a prevalence of 3.31 per 1,000 (Beange & Taplin, unpublished). The 346 adults (confirmed as learning disabled in each case by psychological assessment; IQ <70) represented those people who had come in contact with government and non-government services including schools, medical services, employment and residential services from the time of birth to the time the survey was conducted. A survey of medical disorders by Beange et al. (unpublished) was conducted in 1989-90 on a randomly chosen sample of 202 of this ascertained population. The opportunity arose to conduct a dietary survey during the medical survey. Those living in institutions had been seen previously for the medical survey and could not be interviewed for this dietary survey because a change in policy adopted by the main institution concerned precluded us from including those subjects in the dietary survey. The residents of this institution originated from a wider geographic area than the

A SURVEY OF DIETARY PROBLEMS 43

study area. The 145 people living in the community were approached and all but three agreed to participate in the dietary survey. Details of age, sex, residential status and degree of learning disability are summarised in Table 3.

Table 1 Sex, age range, degree of learning disability and accommodation status of adults with learning disabilities in the Lower North Shore suburbs, in the medical and dietary study groups, and in the community control group

Total n in Medical Dietary Community the area disorders study control

(n = 346) (n = 202) (n = 142) (n = 619) study group group group

(“h) (“h) (“10) (%)

Sex Male 51 48 46 46.5 Female 49 52 54 53.5

Age 20-29 30-39 40-49

43 47 48 36.0 37 34 36 33.4 20 19 16 30.6

Degree of learning disability

‘Mild‘ (IQ 56-70) 34 35 43 ‘Moderate’ (IQ 41-55) 35 40 43 ‘Severe’ (IQ 26-40) 21 14 8 ‘Profound’ (IQ = <25) 10 11 6

Residential 33 47 1 40 7 10

At home with family

Private accommodation * Group home 22 31 43 Institution 38 29 0

*Private accommodation = living in their own home (either rented or owned) and with occasional assistance given by either family or local disability services

Survey method

Participants were interviewed for approximately one hour by a dietitian nutritionist (LS) with the assistance of a family member or care worker. A diet history was used to ascertain usual intakes over the past year and


included a short checklist of basic food types, take-away and snack foods. Questions on the use of salt at the table and the use of special diets were those used in the 1989 National Heart Foundation Survey, while the ques- tion on vitamin supplements was used in the 1983 National Heart Founda- tion Survey. If subjects’ answers to food category and frequency questions were inconsistent with their stated usual food intakes, then their dietary data were excluded from the results. The subjects’ height without shoes was measured to the nearest OScm, and their weight was measured on a beam balance scale to the nearest O.lkg. Body Mass Index (BMI) (weight in kg + (height in metres)’) categories are used in reporting results. The following categories are used: BMI <20 is ‘underweight’; BMI 2&25 inclusive is ‘healthy’ or ‘acceptable’ weight; BMI 25-30 is ‘overweight’; BMI >30 is ‘obese’.

The data collected were compared with the results of the 1989 National Heart Foundation Survey. Those data specific to the North Shore area were selected. This area is larger than, but includes, all the Lower North Shore suburbs we surveyed. These aged-matched counterparts from the North Shore area (331 females, 288 males, 619 in total) are referred to hereafter as the ‘community controls’ or the ‘community control group’. Data collected for the medical disorders survey was also available for correlation with dietary data.

Statistical analyses were performed with the SPSS/PC+ and SPIDA pack- ages. Un-paired t-tests were used to determine if there were any differences between the NHF (control) group and the dietary study group with respect to demographic and clinical risk features. Chi-square tests were used to determine the levels of association between discrete lifestyle factors for the two groups.

Results There is a mean difference of five years in the age of the dietary study

group and the community control group. there were proportionally fewer subjects in the older age group in the dietary study group than in the controls (see Table 1). No age adjustment was applied to results.

Height

Both males and females were found to be significantly shorter than the community controls (females d.f. = 404, p <0.0001; males d.f. = 350, p <O.OOOl). After deleting data from four subjects who could not be measured accurately, the mean height of females was 155.3cm f 9.5cm SD, and males 169.0cm f 1l.Ocm SD, whereas the community controls were 164.3cm f


6.0cm SD mean height for females, and 177.4cm k 6.0cm SD mean height for males.

Body mass index

The mean BMI of females with LD is significantly higher (d.f. = 404, p <O.OOOl) than that for females in the community control group. Table 2 gives a comparison between the female learning disabled subject group and the female community control group for each BMI category. By contrast there was no signficant difference (d.f. = 350, p >0.5571) in the mean BMI of males with LD compared to males in the community control group. Table 3 gives a comparison between the two male groups for each BMI category. Table 4 gives the number of Down Syndrome subjects found in each BMI category. Thirty-two percent of Down Syndrome subjects were found to be obese while only 19.7% of subjects with LD and 8.2% of community controls were obese.

Overweight and obesity were unrelated to the degree of learning disability (chi2 = 8.575, d.f. = 6 ,p = 0.199). However, thiswasnot thecasewithbeing underweight. Of the 14 subjects found to be underweight (BMI <20), five were severely or profoundly learning disabled. Three subjects were very underweight (BMI 4 7 ) and all three had a profound learning disability (IQ <20). The numbers are too small to determine statistical significance.

Table 2 BMI for women compared with their community controls

Number % in dietary % in community in dietary study group control

study group (n = 77) (n = 331)

<20 7

2&25 24

>25-30 23

>30 19 Not included * 4 Total 77

9 31 30

25

5 100

20.8

53.5 17.2

8.5

0 100

*Either not measured or not included because the BMI was considered unrepresentative of body fat status usually because of severe scoliosis


Table 3 BMI for men compared with their community controls

Number % in dietary % in community in dietary study group control

study group (n = 65) (n = 288)

~~

<20 7 11 20-25 30 46 >25-30 18 27 >30 9 14 Not included * 1 2 Total 65 100

13.7 52.0 26.0

8.1 0.2

100

*Either not measured or not included because the BMI was considered unrepresentative of body fat status usually because of severe scoliosis

Table 4 BMI in people with Down Syndrome

Females Males Total (4 Y O (4 % %

<20 0 0 0 0 0 20-25 5 38 5 42 40 >25- 30 4 31 3 25 28 >30 4 31 4 33 32 Total 13 100 12 101 100

There was a relationship between being underweight (BMI <20) and one of the factors affecting dietary intake, namely poor appetite (chi’ = 8.796, d.f. = 2, p <0.012). Being underweight was not related to the subjects’ ability to prepare meals independently (chi’ = 2.871, d.f. = 2,p <0.238), and it was not related to the presence of swallowing difficulties (chi’ = 3.978, d.f. = 2, p = 0.137).

Hypertension and obesity

Learning disabled men and women were more frequently hypertensive than their community counterparts (Table 5), although this difference was


significant only in the women (females chi2 = 4.074, d.f. = 1, p = 0.044; males chi2 = 1.519, d.f. = 1 , p = 0.218). Six out of the seven female subjects with LD found to be hypertensive were also obese (BMI >30) whereas only two of the nine hypertensive male subjects were obese. Although the numbers were too small for statistical significance, the hypertensive female community controls were less likely to be obese and more likely to be on medication for hypertension than the hypertensive female subjects with LD. Although obesity was higher amongst Down Syndrome subjects, none were found to be hypertensive.

Table 5 Hypertension and obesity in learning disabled subjects compared with their community controls

Dietary study group Community controls

Females Males Females Males (n = 73) (n = 66) (n = 331) (n = 288)

Diastolic BP >95mm Hg. * 5 4 2 16

On medication for hypertension 2 5 11 9

Total hypertensive 7 9 13 25

% hypertensive 9.6% 13.6% 3.9% 8.6%

Total hypertensive and obese 6 2 1 3

*But not on medication for high blood pressure. (Note: Hypertensive is defined as having a diastolic BP = >95mm Hg, or, being treated for hypertension.)

Cholesterol

A blood cholesterol equal to or greater than 5.5 mmoVL was found in 29% of learning disabled women measured and 46% of learning disabled men measured. These prevalences were similar to those in the community controls (chi2 = 1.886, d.f. = 1,p = 0.170).

Fifteen of the 17 women with LD who had a blood cholesterol >5.5 also had a BMI >25. Only 10 of the 25 male learning disabled subjects with raised cholesterol levels had a BMI >25.


Other results

Table 6 gives the frequency of dietary and dietary-related factors reported at interview. Ten dietary questionnaires were excluded as unreliable because of inconsistencies in the subjects’ answers.

The frequency of constipation as a reported problem was 19%. On esti- mate 25% of subjects had a dietary fibre intake of less than 15g/day. Of the 27 subjects reported to suffer from constipation 14 had fibre intakes estimated as under 15g/day, and one other had a low fluid intake. Interestingly, the medical survey (Beange et al . , unpublished) reported the use of purga- tives and laxatives as only 2.8%.

Table 6 Frequency of reported dietary and dietary-related factors

(4 %

Able to prepare own meals 63 49 Constipation 27 19

Diarrhoea 13 9.2

Chewing difficulties 12 8.5

Swallowing difficulties 11 7.7 Recent weight loss 15 10.6

Have food allergies or intolerances On a special diet Adds salt to food on plate:

always never sometimes

On vitamin supplements: daily a few days/week occasionally rarelylnever

14 10 34 25

21 15.6 76 56.7 37 6.0

24 18.0 3 2.0

17 13.0 91 67.0

Do not normally eat breakfast 18 13 Estimated milk intake (all sources) <300 mYday 19 13

33 Eat lollies and chocs at least 3-4 timedweek 20 14

Estimated dietary fibre intake <15g/day 36 25

Eat hot fried chips as a take-away once or twice per week 47


Diarrhoea was reported as being a problem in 9.2% of subjects. There were no correlates found for diarrhoea and there were no comparative statistics available for either diarrhoea or constipation in the community.

Discussion This survey highlights a number of dietary and dietary-related problems in

the learning disabled men and women living in the community of the Lower North Shore suburbs of Sydney.

Physically these people are significantly shorter than their community counterparts. The women are overweight or obese at approximately twice the rate of their community counterparts, while the men do not differ significantly in BMI from their community counterparts. The prevalance of being underweight among the women with LD is half that found in their community counterparts.

The frequency of being overweight and obesity in women with LD, and in Down Syndrome subjects (both men and women) was more than twice that found in the community controls. This is the single most important difference in nutritional status of people with learning disabilities living in the community. These data support other research reporting the high prevalence of obesity in the learning disabled population (Burkart et al., 1985; Cunningham et al. , 1990; Green & McIntosh, 1985; Siddall, 1981; Warpula, 1981).

Women with LD were more frequently hypertensive than were their community controls. Not withstanding this, they were less likely to be on anti- hypertensive drug treatment than their community controls. This combination of an increased prevalence of hypertension with a reduced rate of treatment should be of concern to those responsible for providing their health care.

Hypertension is rarely found amongst Down Syndrome people, and in the medical survey (Beange et al., unpublished), no Down Syndrome subject was found with hypertension. If Down Syndrome subjects (18%) are excluded from the dietary study group, the frequency of hypertension amongst the remaining learning disabled subjects is even more serious when compared with their community controls, i.e. 11.7% for the women with LD (three times that of their community counterparts), and 16.7% for males with LD (almost twice that of their community counterparts).

Conclusions These results indicate that the incidence of obesity and being overweight

in adult women with a learning disability who are living in the community is much higher than in the general community. Being underweight is less fre-


quent in the learning disabled group compared to the general community. The most severely underweight adults with LD were in the profoundly handicapped group. Hypertension and hypercholesterolaemia were more frequent in overweight and obese females with LD than in their community counterparts. The nutrition education and dietary counselling currently available to the learning disabled in New South Wales is not specifically targeted nor may it be appropriate for the particular needs of this group. We suggest that specific nutrition education programmes, in concert with proper nutritional assessment and dietary intervention, are needed for people with learning disabilities living in the community.

References Beange, H . , McElduff, A. and Baker, W. (unpublished) Medical disorders in adults

with intellectual disability: A population study. Beange, H. and Taplin J. (unpublished) Epidemiology of intellectual disability in

Northern Sydney adults. Burkart, J.E., Fox, R.A. and Rotaton, A.F. (1985) Obesity of mentally retarded

individuals: Prevalence, characteristics, and intervention. Am. J. Ment. Defic. 90 (3), 303-12.

Cunningham, K., Gibney, M.J., Kelly, A., Kevany, J. and Mulcahy, M. (1990) Nutri- ent intakes in long-stay mentally handicapped persons. Br. J. Nub. 64 (l) , 3-11.

Gouge, A.L. and Ekvall, S.W. (1975) Diets of handicapped children: Physical, psychological and socioeconomic correlations. Am. J. Ment. Defic. 80,149-57.

Green, E.M. and McIntosh, E.N. (1985) Food and nutrition skills of mentally retarded adults: Assessment and needs. J. Am. Diet. Assoc. 85,611-13.

Lindeman, A. K. (1991) Resident managers’ nutrition concerns for staff and residents of group homes for mentally retarded adults. J . Amer. Diet Assoc. 9 1 , 6 0 2 4

Mercer, K.C. and Ekvall, S.W. (1992) Comparing the diets of adults with mental retardation who live in intermediate care facilities and in group homes. J. Am. Diet. Assoc. 92,356-8.

National Heart Foundation of Australia (1983) Risk Factor Prevalence Study, Survey No. 2.

- (1989) Risk Factor Prevalence Study, Survey No. 3. Rice, B.L. (1981) Nutritional problems of developmentally disabled children.

Pediatric Nursing 7, 15-18. Siddall, C.N. (1981) The nutritional care of the multiply handicapped person.

J. Can. Diet. Assoc. 42, 317-20. Springer, N.S. (1987) From institution to foster care: Impact on nutritional status.

Am. J. Ment. Defic. 91,321-7. Thommessen, M. and Riis, G. (1989) Feeding problems, growth, and nutrition in

disabled children. Int. J. Rehab. Res. 12 (l) , 98-9. Thommessen, M., Riis, G., Fronde Kase, B.F., Larsen, S. and Heiberg, A. (1991)

Energy and nutrient intakes of disabled children: Do feeding problems make a difference? J. Amer. Diet. Assoc. 91, 1522-5.

Warpula, D. (1981) Meeting the nutritional needs of the mentally retarded. J. Can. Diet. Assoc. 42, 310-15.

a survey of dietary problems of adults with learning disabilities in the community

Documents