Older Adults with Intellectual Disability Living in a Community Residential Service

by Nancy S. Jokinen

Abstract

Little is known about the living circumstances of older adults with intellectual disability in residential services. The purpose of this study was to describe the living circumstances of 72 adults in one community residential service. Data collected from supervisors included demographic details, living arrangements, health, activities, and staffing. The mean age of the group was 49.2 years with 25% aged 55+. Most individuals shared rental accommodation, had daily staff assistance and limited involvement in community activities. Health concerns were numerous and varied. Few service alterations occurred for 20.8% of people experiencing reported decline in abilities. Findings also indicate demographic, health, activity and service use differences between people aged 40 to 54 and 55+. Of 149 staff, eleven had age-related training. This report describes living circumstances, identifies needs and discusses service adaptations.

Literature Review

Older people with intellectual disabilities (ID) have experienced extraordinary change throughout their lives. They were born in an era dominated by institutionalization and restriction of personal rights. Many individuals, as youth, were excluded from public education and some were sterilized without their consent. Today, many agencies embrace the philosophy of inclusion, community living, and personal planning. Within a Canadian context, little is known about older adults and they are rarely a population of interest for research, policy or programs (Salvatori, Tremblay, Sandys, & Maraccio, 1998).

Community residential living for adults with intellectual disabilities is a relatively recent experience, a trend occurring over the past 20 to 30 years. This might, in part, explain why few reports provide an overall picture of older adults in community residential services. However, with the life expectancy of adults with intellectual disabilities increasing (Janicki, Dalton, Henderson, & Davidson, 1999), the importance of aging within the context of residential services has become crucial.

The predominant themes in the research and literature pertaining to aging and intellectual disability include normal and pathological aging (e.g., sensory loss, dementia), support considerations (e.g., informal support networks, retirement) and the development of partnerships between aging and ID services. The purpose of this exploratory study was to describe the circumstances of adults aged 40+ living in a community residential service and raise the level of awareness regarding the needs of older adults. The study asked two central questions: what are the current living circumstances of older adults in residential services, and what could agencies do to sustain continued in-community living for their older clientele?

A substantial body of research has accrued on the health of older adults with ID. As a group, they are prone to age-related changes and diseases similar to the general population and may be at increased risk for some conditions (Evenhuis, Henderson, Beange, Lennox, Chicione, & Working Group, 2000). The possibility exists that some medical conditions (e.g. hypertension) are under-reported and inadequate or delayed treatment occurs (Beange, McElduff & Baker, 1995; Janicki, Henderson, et al., 2002). Access to health care services and difficulties associated with assessment, diagnosis, and treatment are also major concerns (Evenhuis, 1999). The leading causes of death for adults with ID are cardiovascular diseases, respiratory disorders, and cancer (Janicki, Dalton, et al., 1999; Patja, Molsa & Iivanainen, 2001), yet little empirical evidence is available on specific strategies to reduce risk within this population (Frey, Szalda-Petree, Traci, & Seekins, 2001). Repeatedly, the use of screening tests for early detection and treatment of common health disorders is recommended (Janicki & Dalton, 1998; van Schrojenstein Lantman-de Valk, van den Akker, Maaskant, Haveman, Urlings, Kessels & Crebolder, 1997). Additionally, the need for caregivers and health professionals involved in the lives of older adults to be trained in age-related health matters is voiced (Evenhuis, et al., 2000). Family and staff "...must be vigilant in advocating to healthcare providers for proper health screening." (Ouellette-Kuntz, 2001, p.30)

In regards to pathological aging, a comprehensive text on dementia as it affects persons with ID is available (Janicki & Dalton, 1999). The Edinburgh Principles (Wilkinson & Janicki, 2001) provide a framework for care; however, agency responses vary from aging in place to long-term care referral. Case-by-case approaches, a lack of practice guidelines, limited use of external resources, nominal staff training, and negligible home modification are reported (Janicki, McCallion, & Dalton, 2002). To assist clinicians in the assessment of declining abilities, a baseline record of an individual's previously held abilities is recommended (Janicki, Heller, Seltzer, & Hogg, 1995). In the absence of a standardized measure of abilities, a record of 'personal best' abilities could be kept in alternative formats such as a life book (Janicki, 2001).

Ashman, Hulme & Suttie (1990) suggest that, as a result of aging and the 'legacy of their age', adults aged 50+ had restricted lives compared to younger cohorts. While the social support networks of older persons with ID vary from person to person, they are often characterized as being small and context specific, extending from home through to associations at work and recreation activities. Families, particularly parents and siblings, provide the preponderance of informal support to older adults (Heller, 1999). There are, however, mixed findings on family contact with older persons residing in community residences services. While some individuals have limited contact (Ashman & Suttie, 1996; Botuck & Levy, 1995), others maintain regular family connections (Bigby, 2000).

Little research is available on the employment and social recreation activities in which older adults are engaged. Employment and retirement issues are considered distinct from those of the general population (Sterns, Kennedy, Sed, & Heller, 2000) and low employment rates are reported (Botuck & Levy, 1995; Hogg, Lucchino, Wang, Janicki, & Working Group, 2000; Prosser & Moss, 1996). In addition, as a group, few older adults participate in social, cultural and recreational activities (Ashman & Suttie 1996). Older people, however, perceive their involvement in day programs, sheltered workshops and recreational activities as important to maintaining social relationships (Mahon and Mactavish, 2000).

Within the research and on a practice level, there is increasingly a call for intersystem cooperation between services to the general aging population and those supporting older adults with ID. Despite barriers to partnership, collaborative projects between the two sectors have been accomplished (Ansello, 2001) and access to community aging programs for older adults with ID possible (Lepore & Janicki, 1997). A recurring theme is the need for cross-trained personnel, staff trained in both aging and intellectual disability (Sparks & Temple, 2000).

Prior research on aging and intellectual disability has concentrated on specific topics (e.g. health, intersystem partnership) and some are covered more extensively than others. Few reports, however, provide an overall picture of older adults living in residential service. The purpose of this study was to detail the living circumstances of one group of adults living in a residential service, thereby raising a general awareness of age-related needs.

Method

Context

The study was conducted in an Ontario metropolitan location with a population of 121,986 and population density of 47.9 per sq. km. (Statistics Canada, 2001). In this city, three non-profit agencies provided residential services exclusively to persons with ID. The agency involved in the study provided residential service to 144 people at over 58 different sites throughout the city. It offered a range of residential options (i.e. independent living, small group, family-based, and supportive non-disabled roommate).

Population

The focus of the study was adults aged 40+ living in residential service. The term 'older' distinguished this group from 'younger' adults who are in their 20s and 30s. It should not be construed as meaning adults in their 40's are aged. The data was collected indirectly from personnel responsible for service and working with the individuals.

Procedure

The agency's residential supervisors were asked to complete a questionnaire on each person aged 40+ within their area of responsibility. A meeting with these staff reviewed the questionnaire that was specifically designed by the author . Minor word changes resulted. The supervisors obtained written consent from individuals to compile information for the survey's purpose. Names and addresses were not collected. Birth dates and numbered locations eliminated the possibility of duplication and facilitated data collection. A ten-digit alpha-numeric code identified direct care staff. After completing the surveys, a meeting with each supervisor confirmed any missing data and clarified discrepancies. The information was then translated into SPSS for descriptive analysis by the author.

The Questionnaire

The questionnaire comprised 31 questions; 17 multiple choice and 14 yes/no. It asked basic information on demographic details, living arrangements, health, activities and services provided. Some questions requested details. For example, if the person belonged to a club, the type and frequency of involvement was asked. Identified health concerns were rated (i.e., little, mild to moderate or severe) according to perceived impact on the person's daily living. If decline in an individual's abilities was indicated, six additional yes/no questions were asked. These questions concerned assessment, diagnosis and changes, if any, to the service. A final section identifying staff complement was also requested.

Results

In this residential service, 79 (54.9%) individuals were aged 40+. Survey information was obtained on 91% of this adult group (N=72). Information was not supplied on seven individuals because consent was not obtained. Four persons were away on holiday, one was in hospital, and two did not want their information released. All eleven of the agency's residential supervisors completed questionnaires.

Demographics

Adults aged 40-54 comprised 75% of the group; 25% were 55+. The mean age was 49.2 years (range = 40-72 years). The specific age group findings were 40-44 (24), 45-49 (16), 50-54 (14), 55-59 (7), 60-64 (7), and 65+ (4). Males outnumbered females in the 40-44 age group 2:1 (m=16, f=8). There were, however, no males in the 65+ age group.

Nine women and six men had Down syndrome (DS). The females with DS ranged in age from 40 to 62, with six in their 40's and two aged 51. The males were aged 42 to 53; five in their 40's.

Living Arrangements

People aged 40+ lived at 40 different residential locations. Sixteen of these sites were home to people 55+. A majority of individuals, 66.7% (48), lived with two or three other persons while 18.1% (13) lived with one person; 8.3% people (6) lived alone; and 6.9% (5) lived with four or more people. A high proportion, 84.7% (61), had roommates with a disability. The majority, 55.6% (40), lived with the same roommates for 5+ years

Most people, 77.8% (56), rented accommodations. An agency-owned home was occupied by 11.1% (8) of individuals while the family-based alternative supported 6.9% (5); and 4.2% (3) paid room and board. Thirty-one individuals (43.1%) lived at their location for 5+ years, while 15 (20.8%) had been there less than a year.

Community Involvement

No person had full-time employment. Part-time job titles were cleaner (4), filing clerk (1), paper shredder (1), daycare helper (1), cook / cleaner (1) and landscape worker (1). Of the nine individuals working, seven were in their 40s and one person had Down syndrome. Volunteering and recreation activities were regularly scheduled events in which the individuals participated. Attendance at special programs (i.e. sheltered workshop or day program) varied. Some people attended on a limited basis, for example one day per week at the sheltered workshop.

Of the 21 individuals involved in clubs or organizations, 11 belonged to Special Olympics and five were active in self-advocacy groups. Church was attended by 15 individuals, and three persons maintained a First Nation's connection. No regular family contact was indicated for 25 individuals, 22 were aged 40 to 54 and three aged 55+.

Health

Concurrent health conditions were reported for 49 (68%) individuals; 36 were aged 40-54 (66.7%) and 13 aged 55+ (72.2%). Over thirty-three different concurrent diseases or conditions were identified. Their range and variability was considerable including muscular-skeletal, vision, communication, cardio-vascular, skin, and mental health disorders. Some appeared to be conditions that were being coped with (e.g. psoriasis) while others were debilitating and potentially life threatening (e.g. cerebral vascular events).

One or more health concerns or issues were reported for 56 (80.6%) persons; 45 aged 40-54 (83.3%) and 13 aged 55+ (72.2%). Of these 56 people, 31 (43.1%) had three or more health concerns reported. Medication was the most frequent reported concern. Of 41 people with a medication concern, 17 were male and 24 female. The majority of concerns (22) were rated as having little impact on the individual's daily life.

Mental health was the second highest concern reported. Of the 29 individuals with reported concerns for mental health, 13 were male and 16 female. Mild-moderate ratings noted for 18 persons. Twenty-three of the 29 individuals with a mental health concern also had a medication concern reported.

Two of 11 persons with dysphasia required gastronomies. Cardiovascular concerns were equally split between genders. Ratings were evenly split between little and mild-moderate impact on daily living, however, reversed: males (3, 1) and females (1, 3) respectively. Of the 31 people with impaired vision, 20 wore glasses to compensate. Three of the five individuals with hearing impairment used a hearing device.

Assistive devices were used by 15 individuals; six were aged 55 or older. Nine people used bathroom aids, six required wheelchairs, and one person used a walker. No cane use was reported.

'Personal Best'

A baseline measure of abilities or record of 'personal best' was reported for 35 (48.6%) persons. Four people had a standardized scale and eight had a life book format. Most people (23) had a personal profile plan that contained information concerning their daily living skills and abilities. Seven of the 15 people with Down syndrome had a measure of abilities or record of 'personal best.

People Experiencing Decline in Ability

Fifteen (20.8%) individuals were reported as experiencing a decline in abilities within the last year. Twelve of the 15 were under the age of 55, ten were female, and nine had Down syndrome.

Assessment and diagnosis completed for 13 individuals determined: persons with possible/probable dementia (5); thyroid disorder (1); possible depression (1); inoperable cataracts (1); cerebral hemorrhage/stroke (1); Parkinson's disease (1) and unsure, continuing to monitor (3). Four of the five persons diagnosed with possible/probable dementia had Down syndrome, and were aged 50 or younger. A family doctor or medical specialist determined the diagnosis for nine of the 13 people. The remaining involved a psychologist.

The 15 individuals lived at 14 different locations and shared their living arrangements. To meet their changing needs, the following alterations took place: increased staff (1); modified physical environment (4); received outside agency support (9); and trained staff (4). Changes to the physical environment involved moving an individual to a different home, installing grab bars, using multiple assistive devices, and securing furniture to floor. Clinical support was received from another developmental service agency for seven of the nine individuals and or their staff team. Staff training involved information sessions on dementia (2), physiotherapy requirements (1), and diet/dialysis intervention (1).

Staffing

The agency employed 149 full and part-time staff in the provision of direct residential services to adults aged 40+. Thirty of these staff worked nights. Some age-related training was reported for 11 staff, two of whom worked with adults aged 55+.

Staff provided assistance for both activities of daily living (ADLs) and instrumental activities of daily living (IADLs) to 50 (69.4%) individuals. Additionally, it was found staff planned and supported all activities from the home for 34 (47.2%) individuals.

Supplementary services from a different developmental service agency were received by 30 (41.7%) people. Services from a generic agency were also provided to 20 (27.8%) individuals, the majority for foot care.

Comparison of Age Groups

Differences between people aged 40-54 years (younger group) and those aged 55+ (older group) were found. Demographically, the younger group was three times the size of the older group. In the older group, females outnumbered males 2 Ð 1 and only one person had DS.

Attendance at special programs and family contact (Table 2) also denote difference. More people in the younger group (42.5%) attended a special program than those in the older group (16.6%). No regular family contact was indicated for 40.7% (22) of the younger group compared to 16.7% (3) of the older group.

The reported health concerns (Table 3) for the younger group showed prevalence of thyroid conditions, diabetes, dementia, and dysphasia to be slightly higher; mental health issues higher; and cardiovascular concerns exclusive to the group in comparison to the older group. Also, 80% (12) of people reported experiencing decline in abilities were in the younger age group. The prevalence of seizures and visual impairment, however, notably increased for the older group.

Finally, differences in the use of residential staff hours (Table 4) are noted. The younger group required more 24 hour service than the older age group (70.3% vs. 38.9%). The older group had increased use of weekly service and the option requiring no direct-care staff hours.

Discussion

The purpose of this study was to describe the living circumstances of adults, aged 40+, in one residential service. This service will face increasing demands to adapt to an aging population. Currently, 54.9% of those receiving the service were aged 40+. Of this adult group, 75% were aged 40-54 years, three times the number of those 55+.

The main findings suggest these adults have limited opportunities outside the home environment (e.g., work, social activities), experience numerous health challenges, and are supported by staff largely untrained in aging. The group differences between people aged 40-54 and 55+ suggest aging will continue to impact on service in the forthcoming years. The younger group will likely continue to require current or increased levels of service as they age and, without intervention, continue to experience poor health and limited social activity.

The majority of adults live in small group arrangements that should facilitate the individualization of services and promote community inclusion. Data on employment (12.5%), volunteering (20.8%), club or organization association (29.2%), and religious or cultural affiliation (25%), however, implies marginalized community involvement. Regularly scheduled activities with others outside the home environment appear limited.

Additionally, 25 individuals (34.7%) did not have regular family contact. Social isolation is a significant concern for the overall health and well-being of any older adult and social relationships may have a health protective aspect (Janicki, 1999). By utilizing the principles associated with quality of life (Brown, 2000) within a framework of later life planning (Sterns, et al., 2000), residential staff could enhance individual opportunities for older adults to be more socially connected and active. For example, individual interests can be discerned and matched to various volunteer organizations. With introductions, assistance and encouragement the individual may choose to continue involvement with a volunteer group, extending their social network.

The numerous and varied health issues of the individuals in this study are disconcerting. While the prevalence of medication and mental health issues is thoroughly noted in work with this population (Moss, Bouras, & Holt, 2000; Thorpe, Davidson, & Janicki, 2000), the numbers of reported concerns in this service warrant further exploration. Findings (Table 3) indicate 61.1% of people aged 55+ and 55.5% aged 40-54 had a medication concern. One third of individuals in the older group and 42.6% of those in the younger group had mental health concerns reported. Twenty-three of 72(31.9%) individuals had both mental health and medication concerns reported.

Other results are suggestive of under-reporting. The prevalence of impaired hearing (9.7%) is lower than indicated in other studies (Janicki, Henderson, et al. 2002). Also, only eight individuals, all under the age of 55, had cardiovascular concerns despite the fact that cardiovascular disease is a leading cause of death for adults with ID and the general population.

The necessity to adopt staff guidelines and responsibilities to monitor the health of individuals living in a residential service is evident. "The fact of aging should not preclude... implementing, and practicing prevention for older adults; it is no longer a paradox" (Bhalotra & Mutschler, 2001, pp.18). Staff plays a key role in early detection of health problems people experience, timely access to treatment and the promotion of healthy lifestyles (Evenhuis, et al., 2000). Information to assist in developing guidelines for staff is available from a number of sources. As within the general population, there is a need for regularly scheduled medical check-up including routine tests for thyroid, diabetes, cholesterol levels and hyper/hypotension; dental appointments; hearing and vision screenings; and immunizations (Bhalotra & Mutschler, 2001; Evenhuis, et al., 2000; Janicki, Dalton, et al., 1999). Additionally, practice guidelines recommend a baseline of abilities recorded for adults with Down syndrome by age 40 and others by the age of 50 that facilitates diagnosis and treatment in the event of declining abilities (Janicki, Heller, et al., 1995).

A significant finding in this study was only 11 of 149 staff had some form of age-related training. Staff familiarity with age-related changes, conditions, and needs is consistently recommended and crucial to the provision of appropriate services (Evenhuis, et al., 2000; Hogg, et al., 2000). Age-related training of both new and existing staff can be accomplished, despite the challenge of a service system that is scattered across multiple sites and obstacles presented by fiscal restraint.

A training package could be developed and introduced to new staff during orientation. It could then be adapted to meet the specific training needs of existing staff teams. For example, such a package for a team providing service to people with Down syndrome could include syndrome-specific information on aging. In developing the training at a local level, expertise from both aging services geared to the general population and specialized services for persons with intellectual disability could be utilized. This would provide opportunities for staff from both sectors to learn from one another (Sparks & Temple, 2000).

Finally, the differences between the younger (40-54 year olds) and older (55+ years) groups of people within the cohort is noteworthy. Comparatively, the younger group does not appear to be as healthy as the older group and utilizes more 24 hour residential staff service. The younger group also participates more in special programs than the older group (42.5% vs. 16.6%). Additionally, a smaller portion of the younger group has regular family contact (59.3% vs. 83.3%).

The greater need for support of this younger group is explained, at least in part, by their history. A number of these individuals re-located to community residential services with the closure of an institution where they lived for a period of time. Further exploration of the factors contributing to their need for greater service is warranted. What changes will aging bring for individuals in this younger group? The prospects for them to enjoy community living as senior citizens depends on having residential staff trained in aging, adequate healthcare in place, and the promotion of healthy lifestyles.

The results of this study are indicative of the living circumstances of older adults in one residential service as reported by supervisory staff. The findings point out the need for residential services to address the changing age-related needs of people.

Conclusion

The abilities of an agency to systematically respond to current needs while proactively planning for the future is a challenge that must be met (Janicki, 1999). There are now many individuals within residential services who are reaching older ages and will require age-related supports and assistance. External pressures will also begin to be exerted on agencies to provide residential services to older adults who have spent a life-time with family (Braddock, 1999; McMahon, 1999).

The results of this study indicate a number of areas where agency initiatives are possible. Other adaptations will be required, some relatively easy to institute while a few will take concerted effort over time. The impact of an aging population on residential services will be significant and should be recognized as a crucial component of any strategic planning an agency undertakes.

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Footnote

This study was undertaken as partial fulfillment of requirements for the degree of Master of Social Work, Specialization in Gerontology at Lakehead University, Canada. The author acknowledges and thanks the agency staff for their cooperation. Gratitude is also expressed to Dr. M. P. Janicki.

Submitted by

Nancy S. Jokinen, PhD Student, University of Calgary, Community Rehabilitation and Disability Studies, Education Tower, Room 413, 2500 University Drive NW, Calgary AB T2T 1N4 Email: nsmjokin@ucalgary.ca

Author Biography

Nancy Jokinen has a Master of Social Work, Specialization in Gerontology and years of experience working for services to people with intellectual disability and their families. More recently, she was the Program Manager of a Special Treatment Unit for persons with Alzheimer's disease or related dementias. Currently, she is undertaking full time PhD studies at the University of Calgary and works part time as a registered social worker in a long term care facility.

International Journal of Disability, Community & Rehabilitation
Volume 2, No. 1 Canada
www.ijdcr.ca
ISSN 1703-3381