Margaret P. Calkins, M Arch
Kevan H. Namazi, PhD
Margaret P. Calkins, M Arch, is Design Specialist, The Research Center, Corinne Dolan Alzheimer Center at Heather Hill, Chardon, Ohio.
Kevan H. Namazi, PhD, is Director of Research, The Research Center, Corrine Dolan Alzheimer Center at Heather Hill, Chardon, Ohio.
More than four million Americans suffer from Alzheimer's disease and related dementia. Alzheimer's disease manifests itself largely in pathological, neurochemical and neuroanatomical changes that translate into abnormal behavioral phenomena. Recognition of these behavioral manifestations has generated research that goes beyond the etiology and pathology of the disease to explore a variety of mechanisms for helping the patients maintain independence and autonomy.
A related topic of interest has been the exploration of various caregiver coping strategies. However, the physical environment as a therapeutic tool to manage behavior, or as a coping strategy for caregivers, has been generally ignored. Several person-environment interaction models have been developed that suggest that the potential impact of the physical environment is even greater on people with cognitive impairments. Given this evidence of the potential therapeutic effect of the physical environment, there has been surprisingly little empirical research on environmental modifications to counter specific deficits which the ARD population experiences. Although work in this area has focused primarily on institutional environments, a few researchers have attempted to evaluate the home environment. For example, in her study on incontinence, Noelker found that enviromnental barriers can contribute to incontinence. Her findings were among the first to demonstrate the effects of the home environment on both the patient and the caregiver. Therefore, sufficient evidence exists to support the hypothesis that the physical environment has tremendous impact on an individual.
The purpose of this study was to identify a variety of modifications made mostly by caregivers to the homes of people with ARD, to ascertain the effectiveness of each modification, and to evaluate the impact of the changes on the confused person and on the caregiver. Of primary concern were modifications made to increase the safety or autonomy of the person with ARD. For the purpose of this project, a modification was defined as any change made for the safety, security, or comfort of the person with ARD, and/or as a change that makes caregiving easier.
Purposive sampling of Alzheimer's Association support group members, and of local nursing home residents' family members, resulted in a pool of 59 respondents who were primary caregivers for someone with ARD, and who lived in Northeast Ohio (see Table 1). A semi-structured interview lasting between 19 and 105 minutes (mean = 61) was administered over the phone to the caregivers. Respondents were asked to focus on difficult behaviors manifested by the person with dementia - particularly wandering, incontinence, and disruptive activities; to report any modifications made, and to rate the effectiveness of the modification using the following ratings: "worked well," "worked somewhat," or "did not work at all."
The modifications were grouped into four categories:
Every one of the 59 caregivers had made at least one modification to the home when caring for their family member with ARD.
Approximately two-thirds (69 percent) of the caregivers indicated their family member wandered out of the house, making this the most frequently mentioned problem. The 46 modifications made for wandering were predominately successful: 73 percent worked well, 18 percent worked somewhat, and 7 percent did not work at all. The modifications most frequently made included adding a dead-bolt or chain lock, hanging a curtain in front of the door to disguise it, moving a piece of furniture in front of the door to limit access to it, and locking the screen door.
Fewer modifications were made to manage incontinence (n = 35) than were made to manage wandering, although almost as many respondents (68 percent) indicated incontinence was a problem. These modifications generally fell into two categories:
The most common modifications were leaving the lights on in the bathroom, raising the height of the toilet seat, installing a night light, installing a commode (portable toilet) in another room in the house, and adding a sign pointing to the bathroom. Caregivers reported that 48 percent of these modifications worked well 31 percent worked somewhat, and 21 percent did not work at all.
Safety and independence
The next most frequently mentioned reason for making a modification was for the safety and independence of the person with ARD. Modifications were made primarily in the bathroom and kitchen, although the living room, bedrooms, and stairs were also mentioned. Sixty-three percent of the respondents indicated that, for safety reasons, they had made at least one modification in the bathroom. While this is fewer than the number of caregivers who indicated incontinence was a problem, the number of modifications made for safety (n = 62) was almost double the number made for incontinence (n=35). These modifications were largely successful: 91 percent worked well, 6 percent worked somewhat, and only 3 percent did not work at all. Removing medicines from the bathroom, installing a shower or tub chair, adding grab bars to the tub or toilet, adding a non-skid tub mat, and installing a hand-held (wand) shower head were the most frequently made changes.
While only 56 percent of the respondents made modifications for safety and independence in the kitchen, 95 modifications were made the greatest number of modifications in any area of the house. The two most frequent modifications made in the kitchen were unplugging appliances and removing equipment. Other common modifications included installing a separate power switch for the stove, and adding signs (primarily indicating potential hazards). These changes were predominately successful: 76 percent worked well, 11 percent worked somewhat, and 10 percent did not work at all. Fewer modifications for safety and independence were made to living and dining rooms (n=59), bedrooms (n=67), and stairs (n=27). These changes included removing long cords from the living and dining rooms, adding rails to the bed, and installing a gate in front of the stairs. The modifications were largely successful: 85 percent of modifications to living and dining rooms worked well; 79 percent made to bedrooms worked well; and 78 percent made to stairs worked well.
The final category pertains to changes made to reduce confusion and havoc in the house. Limiting access to one or more rooms (usually by closing a door) was the most frequently mentioned change, followed by removing clutter, sharp objects, and unnecessary pieces of furniture. These modifications were generally successful: 74 percent worked well, 21 percent worked somewhat, and 5 percent did not work at all. Evaluations of modifications suggest that, overall, caregivers thought they were beneficial. Of all modifications made, 77 percent worked well, 15 percent worked somewhat, and 8 percent did not work at all. When respondents were asked about the effects or benefits of the modifications they had made, 85 percent indicated the changes benefited them. Statements included:
At the same time, 77 percent indicated the modifications seemed to help the confused person. Statements included:
The fact that every participant in the study had made at least one modification suggests that these caregivers used the physical environment as a therapeutic tool in caring for someone with dementia. Concern for the safety of the person with dementia was frequently the impetus for making an environmental modification. Large percentages of caregivers made modifications to manage wandering out of the house, and to make the kitchen and the bathroom safer. In addition, many caregivers made certain modifications for both safety and independence, suggesting that caregivers view safety as a prerequisite for autonomy. Results suggest that some problems or behaviors are less suited to environmental management. For instance, despite the large number of caregivers who stated that incontinence was a problem, fewer modifications were made to manage inconsistencies than were made to manage wandering or safety in the kitchen or bathroom. Also, the modifications made for incontinence were less helpful than those made for wandering or for safety in the kitchen or bathroom. Incontinence is a complex problem. There are a variety of causes and categories of incontinence, some of which may not be responsive to modifications in the physical environment 14. The lack of success of the modifications for incontinence is particularly disturbing in light of the Noelker's 13 findings on the stress effects of incontinence.
Although the primary purpose of the study was not to evaluate caregiver stress, the positive responses to the effectiveness of the modifications (77 percent worked well), the benefits to the caregivers (85 percent indicated the changes helped them), and the benefits to the person with dementia (77 percent said the modifications helped the person with dementia) lend support to Noelker's l3 hypothesis that environmental modifications may be one step in the amelioration of caregiving stress. Several methodological and procedural factors suggest a cautionary approach in generalizing the findings to any other group. These factors include the limited number of respondents, potential inaccuracies in respondents' reporting the diagnosis and duration of the disease(s), possible inaccuracies in recording environmental modifications due to the interview technique, and variations in the time between making the modifications and participating in the interview (a time lapse as long as five years occurred) possibly distorting the remembered effects of the modifications.
Further studies on home modifications should include more exact information on the diagnosis and/or stage of the disease(s), and more detailed assessments of caregiver stress particularly relating to specific problems (wandering, incontinence, safety, etc.). Regional differences in housing design and modifications should also be explored. Light and Liebowitz suggest that Alzheimer's disease research objectives (in the absence of a treatment or cure) are to find ways to reduce excess disabilities and maximize independence of the person with dementia and also to maximize family coping through behavioral treatments and family supportive interventions. Although more research is needed, results of this study on home modifications suggest that modifying the home environment can enhance the lives of people with dementia and their caregivers.
1. U.S. Congress, Office of Technology Assessment: Losing a million minds: Confronting the tragedy of Alzheimer's disease and other dementias (OTA-BA-323). Washington, DC, US Government Printing Office, 1987
2. Cohen G: Preface. In Light E and Lebowitz BD (Eds): Alzheimer's disease treatment and family stress: Directions for research. (Department of Health and Human Services Publication no. ADM89-1569). Washington, DC, US Government Printing Office, 1989
3. Lawton MP: Competence, environmental press and the adaptation of the older person. In MP Lawton, PG Windley, TO Byerts (Eds.): Aging and the environment: Theoretical approaches. New York Springer Press, 1982
4. Lawton MP, Nahemow L: Ecology of the aging process. In MP Lawton, C Eisdorfer (Eds.): Psychology of adult development and aging. Washington, DC, American Psychological Association
5. Kahana E: A congruence model of person environment interaction. In MP Lawton, PG Windley, TO Byerts (Eds.): Aging and the environment: Theoretical approaches. New York, Springer Press, 1982
6. Calkins MP: Design for dementia: Planning environments for the elderly and the confused. Owings Mills, MD, National Health Publishing, 1988
7. Cohen U, Weisman GD: Holding onto home: Designing environments for people with dementia. Baltimore, Johns Hopkins University Press, in press
8. Hiatt LG: Environmental design and mentally impaired older people. In H Altman (Ed.): Alzheimer's disease: Problems, prospects and perspectives. New York, Plenum Press, 1987
9. Lawton MP, Fulcomer M, Kleban MH: Architecture for the mentally impaired elderly. Environment and Behavior, 1984;16:730-757
10. Namazi KH, Rosner TT, Calkins MP: Visual barriers to prevent ambulatory Alzheimer's patients from exiting through an emergency door. The Gerontologist, 1989;29:699-702
11. Calkins MP, Nainazi KH, Rosner TL Olson A, Brabender B: Home modifications: Responding to dementia. (Available front: The Research center, Corinne Dolan Center at Heather Hill, 12340 Bass Lake Rd., Chardon, Ohio 44024), 1990
12. Pynoos J, Cohen E, Lucas C: Environmental coping strategies for Alzheimer's caregivers. Am J of Alz Care and Related Disorders & Research, 1989;4:4-8
13. Noelker LS: Incontinence in elderly cared for by family. The Gerontologist. 1987;27:194-200
14. Mitteness LS: The management of urinary incontinence by community-living elderly. The Gerontologist, 1987;27:185-193
15. Light E, Lebowitz BD: Alzheimer's disease treatment and family stress: Directions for research. (Department of Health and Human Services Publication no. ADM89-1569). Washington DC, US Government Printing Office, 1989
This study was supported by Pilot Research Grant PRG-88-053 from The Alzheimer's Disease and Related Disorders Association, 1988.
The authors would like to acknowledge the assistance of Brenda A. Brabender in the preparation of this manuscript.
Reprinted with permission from the American Journal of Alzheimer's Disease.
Originally printed in the Journal of Alzheimer's Care & Related Disorder Research, 6:1, Jan - Feb 1991, p. 25-29.