Opening an Alzheimer's Day Care Cente r
From the staff of the S. Mark Taper Foundation Adult Day Health Care Center, Los Angeles Our agency had operated a one-of-a-kind Alzheimer's Day Care Resource Center (ADCRC) since 1989, having e ntered this venture well ahead of the trends toward adult day care and respite. The center operated at its capa city average daily attendance (ADA) of 24 participants for several years, and the demand for services continued . Nevertheless, our ADCRC had five significant problems:
1. A crippling agency deficit. Because our nonprofit agency, St. Barnabas Senior Services, serves a largely working-class and low-income population, our clients generally are not able to pay the actual cost of care, which is $45 to 70 per day. Our ADCRC client s were paying approximately 25% of that. As a result, our agency, with the approval of its board of directors, accepted a deficit in this program that was offset mostly by agency reserves and, to a smaller degree, from fou ndation grants or scholarships and stipends for participants from various helping agencies. Even with this supp ort, the agency habitually carried a $100,000 deficit in the ADCRC from year to year.
2. We were a we ll-kept secret. Our agency had a good reputation among those who knew us, but it needed to be broadcast mor e widely: Clients came to us by word of mouth, mostly from other clients residing in our low-income, ethnic, in ner-city neighborhood with an inability to pay the full cost of the program.
3. Facility limitations. Four to six staff members cared for 24 people each day in one room measuring approximately 28' × 30', whic h posed several problems:
- For hours at a time, participants who were in the early stages of Alz heimer's disease were observing people in the later stages-a potentially depressing and demoralizing experience for them.
- No space was available for a participant who needed privacy or isolation during the day.
- The possibilities for activities were limited to group activities, which are not always effective for peop le with dementia.
- To use the toilet or shower, participants had to be taken by the program aides from t he room and escorted across a dining room and lobby used by more active, independent seniors.
- Because t he day care room was adjacent to areas for independent seniors, participants had to be monitored closely so the y would not wander from the building and get lost.
- Located as we were in the inner city, we owned no ou tdoor space, which severely limited opportunities for participants to spend time outdoors. Staff took participa nts on walks in the neighborhood and to the nearby park, which itself posed several risks: (1) Our neighborhood has a high crime rate; (2) staff were escorting clients across busy major city thoroughfares to get to a park that has a reputation for various illegal activities; and (3) a high staff-to-client ratio was required because of the tendency for people with Alzheimer's to wander, become disoriented and confused, and sometimes act out when they are disoriented and confused.
4. No expertise in activities. While the ADCRC staff had a s trong reputation for caring and kindness, they had no expertise in developing and directing activities for the participants. Program aides were intuitively aware of the need for planned activities, but the deficit position of the program severely limited the ability of the agency to spend money on equipment or materials. Program ai des created programs almost on an ad hoc basis, bringing materials from home for the activities.
5. N o medical support. Although people with Alzheimer's have significant medical problems, as a state-regulated social day care program, the ADCRC offered personal care and social and recreational activities, but no medica l or therapeutic services. ADCRC staffs typically consist of paraprofessionals with no certification and no par ticular training required except, perhaps, on-the-job training. We were acutely aware that clients needed medic al monitoring and therapy not only to attend to urgent problems, but also to assess and monitor the chronic hea lth problems of participants who are often fragile and noncommunicative, but we did not have the personnel for this. We concluded that by opening an Adult Day Health Care Center (ADHCC), our agency would address the problems of the ADCRC in the following ways:
1. Moving from a deficit to a positive cash flow. Transitioning from an ADCRC social day care m odel to an ADHCC medical day care model opened new revenue opportunities for us to solve our deficit. Adult day healthcare is Medicaid-reimbursable in California at the rate of $70 per day. As social day care programs, ADC RCs do not qualify for any medical insurance (with the exception of one health plan). We knew that most of our existing participants in the ADCRC would qualify for Medicaid, as would a very large percentage of the people r esiding in our low-income neighborhood. We persuaded the one health plan that supported ADCRC (for ten of our c lients) to continue paying for the care of people who did not qualify for Medicaid-reimbursable ADHCC. Based on the expanded services of the new facility, we negotiated with the HMO for an increase in its daily rate and nu mber of individual days allowed.
2. We would fill an important niche that appeals to people outside o ur low-income neighborhood. That is, we would attract more affluent people who can pay privately, thus dive rsifying our revenue streams. Affluent clients are attracted to our ADHCC because no comparable service exists in our city at any price. Most ADHCCs care for people with a variety of chronic illnesses-e.g., arthritis, hear t conditions, high blood pressure, diabetes-but who are cognitively intact and comparatively active. People wit h Alzheimer's disease generally do not do well in an environment for more active seniors because they have diff iculty dealing with heightened noise and activity, and they are likely to wander and become disoriented, confus ed, and anxious. Even ADHCCs willing to accept clients with dementia often discharge people as they advance bey ond early stages because the centers cannot deal with the behavioral problems. This often leads to unnecessary institutionalization.
3. We would offer what most other centers did not: a full day program that accommodates the schedules of working families; chaperoned "door-through-door" transportation between home and the center; a staff specially trained to care for dementia and committed to comprehensive care, including behav ior modification techniques, home visits, case management, and assistance with toileting and personal hygiene; and a staff committed to training and assisting caregivers in addressing problems at home so that care between home and the center would be consistent.
Creating a Facility
We designed and constructed a co mparatively small building-5,000 square feet-to fit the needs of 60 people with dementia who would do better in a smaller, quieter environment. The building is an open environment that includes three distinct activity area s, a double shower and laundry, a quiet room where participants may retreat at will, a kitchen, and offices for the nurse, social worker, and program director overlooking the activity rooms. A richly landscaped, 2,500-sq-f t courtyard is accessible from the back of the building, while another 500-sq-ft courtyard is accessible throug h the front. Both are designed so participants can come and go as they please throughout the day, with close mo nitoring. Decorative fences with a leaf motif surround the courtyards and are equipped with alarms for security .
We engaged interior designers who typically work for high-end residential facilities to furnish the f acility with upholstery and accessories-in addition to the usual tables and dining chairs-that define several a reas and encourage socialization and community activities. This space can be reconfigured throughout the day to accommodate a variety of activities, as well as therapy. Innovative ideas about activities. Activities and the activities director are regar ded as the core of our ADHCC, and occupational therapy forms the foundation for the activities. We employ a pro gram we call the Multicultural Alzheimer's Pilot Project (MAPP), which was designed by our occupational therapi st, Ellen Bauer Hume, to provide activities for a very diverse clientele (Caucasian, including ethnic European; African-American; Hispanic; Korean; Chinese; and Filipino). MAPP promotes the activities program as not just a set of discrete activities presented at intervals throughout the day to keep people busy, but as a constructiv e and enjoyable use of every moment of the day.
A qualified team. The federal and state governmen ts regulate ADHCCs that, as medical day care models, are mandated to have continuous on-site medical monitoring by a program director, activities coordinator, clinical social worker, and registered nurse who consults, as n eeded, with our medical director, family caregivers, primary care physicians, consulting dietitian, and consult ing pharmacist. A panoply of therapeutic service providers is required on-site for a specified number of hours per week. Occupational, speech, and physical therapists not only provide services to participants, but also tra in and supervise paraprofessional staff and provide guidance to families on managing participants at home. The new paraprofessionals we hired were experienced with the populations we serve and were recruited for their lang uage skills, as well as their professional skills, to ensure we had no communication barriers. While we could h ave operated the program with program aides (for which there are no prerequisites or training), we opted to hir e CNAs and to send existing program aides from our previous ADCRC program to school to become certified. All pr ofessional and paraprofessional staff received five days of in-service classroom training regarding our ADHCC's mission and methodology.
Marketing and outreach. Because we had built a research-based, state-of -the-art facility designed specifically for people with Alzheimer's and other forms of dementia, we carefully n urtured and emphasized those features in an active marketing campaign directed toward media, community architec ts and developers, affluent caregivers, and community members we dubbed "influentials": physicians, social work ers, rehabilitation specialists, discharge planners, and clergy-people to whom caregivers turn when looking for advice about services. We take care to emphasize our university affiliations; the University of Southern Calif ornia Schools of Medicine, Gerontology, and Social Work and the Department of Occupational Science and Occupati onal Therapy, and other local universities, participated in the design of the building and/or the ongoing progr ams. We also emphasize our role as a training site for interns and residents. &n bsp; Progress Notes
Mr. S was re ferred by the Social Service Coordinator (SSC) because of his request to vacate his apartment. The SSC noted th at paranoid ideations and anxiety (dementia-related) had prompted Mr. S's unhappiness and discomfort in his apa rtment. His son was also concerned about these issues. Since placement in the ADHCC, Mr. S and his son report a significant decrease in the former's paranoia and anxiety; he is much more comfortable and relaxed in his apar tment.
Mrs. K has Alzheimer's disease and had gotten lost many times in the past. She was evicted from the assisted living facility where she lived because of her wandering. Her d aughter, who works full time and was unable to care for her mother at home, visited ten other ADHCCs, but none would accept Mrs. K because of her Alzheimer's and wandering behavior. Had she not found our center, the daught er was planning to place Mrs. K in a nursing home. As it turns out, the design of our building and courtyards, combined with the 1:5 staff-to-client ratio, allows Mrs. K to wander indoors and outdoors safely.
Mrs. T resides alone in an affordable senior housing complex and expresses intere st in participating in activities that help her maintain her independence. She was referred by the SSC at the c omplex after Mrs. T's neighbors and building manager repeatedly complained about her wandering and disturbing h er neighbors by knocking loudly on their doors. These issues had put her at risk of eviction. In addition to he r coming to the ADHCC daily and participating in its activities, the ADHCC staff provided behavioral interventi ons at her apartment complex, such as notes on neighbors' doors reminding her not to knock and other signs neig hbors posted when they were available for a visit. As a result, the incidents annoying her neighbors have cease d, and Mrs. T has not come to the attention of her apartment manager since her placement and subsequent progres s at the ADHCC.
Mr. H has Parkinson's disease and is completely depe ndent on his elderly spouse for care. His spouse transferred him to our center because the ADHCC he previously attended was not able to provide for his personal care needs, such as bathing. His spouse stated that she would have been forced to place Mr. H in a nursing home if she had not found our center.
Mr. G has a long history of aggressive behaviors, such as hitting, pinching, and spitting, whic h were barriers to his participation in daily activities and development of positive relationships with others. Paraprofessionals in the ADCRC in the past exercised great patience in dealing with these behaviors but had no means to modify his behavior other than isolating him when he became particularly aggressive. The ADHCC social worker and occupational and physical therapists coordinated a plan of care incorporating verbal and nonverbal interventions and environmental modifications to decrease his anxiety and aggressive reactions stemming from hi s anxiety. These professionals trained the paraprofessionals in the use of these interventions and modification s so all staff would respond to Mr. G in a consistent manner. Since implementing his individual plan of care, M r. G's incidents of physically aggressive behavior have decreased from one to two times daily to zero incidents per day within the last quarter. More recently, changes in his feeding practices that were directed by the phy sical therapist and dietitian have reduced his spitting by 80%. As a result, Mr. G's anxiety-the precipitant of much of his aggressive behavior-has decreased. The staff report him appropriately expressing affection toward others, both staff and participants. Having habitually opted out of practically all activities, he has recently chosen to participate, completing or nearly completing projects such as painting, with verbal cues from progra m aides. Recently, he was able to sit through his quarterly reevaluation with the occupational and physical the rapists without incident. Plannin g
Initial plan. We developed a business plan that incorporated a financial forecast for the first five y ears of the facility's operation, a feasibility study, a competitive market analysis, and a marketing plan.
Using a list of adult day care programs published by the Alzheimer's Association, we mapped all the ADHCCs within ten miles of our agency. Of those 44 ADHCCs, we selected 15 that were most closely located (within two miles) and conducted telephone interviews, asking them about the services they offered and the populations they served. When the ADHCCs we called permitted, we visited the sites and evaluated the appearance of the faciliti es and the programs taking place within. Our staff identified themselves as employees of St. Barnabas Senior Se rvices trying to identify services that are available to people in the community. About two-thirds of the cente r directors were willing to answer our phone survey, and most were willing to allow us to visit. Most likely th ey were cooperative because ADHCCs are actively seeking participants in order to sustain their businesses, and a social service agency such as ours could refer clients to them. We did encounter some center directors who we re suspicious and reluctant to disclose information, have us visit, or allow us to see their clients. Our gener al experience was that the better-quality ADHCCs tended to be more open, both in answering questions and inviti ng us to visit. One center located in an area of the city where we are unlikely to be competitors was quite gra cious in consulting with us about business operations, including documentation, billing, and rate setting.
Finally, of the 15, we selected the three ADHCCs that were most likely to be our competitors and made a mor e detailed competitive analysis of their facilities and services compared with those we proposed to build and o ffer.
Concurrently, we sent a survey to physicians, social workers, discharge planners, and rehabilitat ion therapists asking them what they knew about services provided by ADHCCs and what services they were seeking for their patients.
As for the business plan, it was apparent that a successful ADHCC must be ru n as a business because of the considerable expense involved in providing the kind of programs and staff requir ed to operate such a program properly. The ADHCC had to set a goal to be self-sufficient-like any healthy busin ess-within two years of opening or it should not be built. Key to the business plan were the aforementioned sur veys of other ADHCCs and feedback from people in the community who would make referrals to us and influence pat ients and their caregivers to consider our services. The survey of professionals who might make referrals also turned out to be a marketing and educational tool, as the influentials we surveyed had not previously seen an A DHCC like the one we described in the survey.
Staffing. We recruited the Administrator, Program D irector, Assistant Program Director, Occupational Therapist, and Activities Coordinator a year before construct ion began to work with the architect to design a building that reflected their knowledge, experience, and theor ies about how architecture and environment, programs, and operations would best serve the target population. Al l the professionals hired during the planning phase had considerable experience in the fields of aging, adult d ay healthcare, social work, gerontology, and occupational therapy. The Administrator came from a strong systems and research background and was determined to have the building designed to fit the staff and participants, ra ther than fitting the staff and participants to a building concept produced by someone outside their fields of expertise. In addition to their own experience, the professionals participating in the planning devoted time to visiting other centers and reviewing the academic research on architecture, environments, programming, and dem entia.
Mrs. E has early-stage Alzheimer's disease. She had earned her living as a profe ssional seamstress. In keeping with our MAPP concept, the occupational therapist designed a project to fit her interests and abilities. With the assistance of aides, the OT cuts the shapes for lap quilts, which Mrs. E then sews together with fine, almost invisible stitches. She has made three lap quilts in two months, an activity s he never tires of; and she can share this activity with others at the center by showing them how to sew and by having her work hung on the wall with recognition for her talent. Mrs. E said of this experience, "I'm so glad I don't have to do the hard work of planning; I can just do the fun part of sewing. It helps me keep busy. I ca n't do this anywhere else."
Mr. I has Parkinson's disease and very limited functional ability. A professional man who used to be very active, he is still adjusting to his conditi on and decreased independence. He says he enjoys coming to the center because it makes him feel "normal."
Mr. W, who is mildly retarded and has dementia, has been an ADCRC partici pant for several years. He has always been very close to his family, especially his sister, a school- teacher, who has looked after him most of his life. With day care services, Mr. W is able to live in a home that he owns , with his sister living nearby and checking on him daily. His sister has said that, if not for our center, she would have quit her job long ago to care for Mr. W as he declined. Mr. W's family was one of the families that had to stretch to meet the additional expense of the new ADHCC, and they were able to petition their insurance company for a higher daily rate and reimbursement for more days of care at our center.
Mr. A's daughter enrolled him in another ADHCC before our ADHCC opened and then had him tra nsported to our ADCRC in the afternoons because the other ADHCC did not provide care after 3 p.m. The daughter reported that her father felt increasingly withdrawn and isolated at the other ADHCC, not participating in the activities and reporting, when asked, that his only activities were eating and exercise. Mr. A also reported to his daughter that he had wandered "very far" from the other ADHCC before someone from the center found him. In a recent letter to Medicaid justifying switching her father from the other ADHCC to ours when it opened, Mr. A 's daughter stated: "I asked my father on many occasions which facility he prefers.... He emphatically told me every time that he prefers to go to [S. Mark Taper Foundation ADHCC].... When I asked him his reasons for his c hoice, [he told me]: (1) 'There are less people there' (i.e., less crowded), (2) 'Their transportation is bette r and the staff is more helpful,' (3) '....The way they treat me is much better. I like them and they like me, too.' He now actually feels he belongs with the group.... [My father] benefited from the help and support he re ceived at [the other] ADHCC for a time.... However, the significant difference...with the new ADHCC is that the ir program is more specialized, and their staff is more specialized and knowledgeable about the problems and ne eds of people with Alzheimer's disease.... Also, their staff appear to be more sensitive and more capable of as sessing/monitoring even subtle/less obvious changes in my father's behaviors and functioning, especially his me ntal status and, hence, are able to make appropriate adjustments on his activities.... [The center] does help a lot, not only for the participants like my father, but for the caregivers like me, as well."
The Competitive Edge
As m entioned, when we did a competitive analysis of 44 ADHCCs in the metropolitan area, we found only three that pr ovided any specialized programming for people with Alzheimer's. By comparison:
- Our ADCRC/ADHCC is among a few adult day care programs that offer services Monday through Friday from 7:30 a.m. to 5 p.m. Most ADHCCs operate from 9 a.m. to 3 p.m.-an insufficient solution for families attempting to work and keep a vulne rable loved one at home.
- Our ADCRC/ADHCC accepts clients at early to late stages of dementia. Many ADCR C/ADHCCs refuse to accept clients in the late stages.
- Our ADCRC/ADHCC accepts clients with incontinence . Most ADCRC/ADHCCs refuse to accept clients who are incontinent or, if they are, often charge an additional fe e for their management.
- Few ADHCCs could match the experience of our team of paraprofessionals who had been working together with Alzheimer's clients for several years, or the expertise of the professionals brought on board to design and establish our facility. Nor could they match the loyalty of our clients, many of whom h ad been with us for years.
Ironically, advances in the medical treatment of Alzheimer's disease will increase, rather than d ecrease, the demand for day care. According to a 2002 article in the Annual Review of Public Health, "If successful treatments to slow disease progression became readily available by 2010, then 10.33 million elderly will have AD by 2050, virtually the same as if no change in treatment occurred, but the preponderance of perso ns with the disease will be mild cases (59%). The net effect would be to increase the burden on families by req uiring additional years of caregiving, and additional outpatient support services would likely be needed. Thus, whole new modes of care would need to be developed, such as outpatient clinics devoted to Alzheimer's care, ex panded dementia day programs, and respite care services for caregivers. The lesson we learn from all this is th at the disease is not going to go away if we have significant treatment advances. [The] introduction of signifi cant new therapies would rapidly change the health services needs of people with Alzheimer's disease. And that means that the health system must begin thinking ahead and preparing for these eventualities, particularly as d rugs begin to make it through clinical trials." 1
1.Sloane PD, Zimmerman S, Suchindran C, et al. The public health impact of Alzheimer's disease, 2000-2050: Potential imp lication of treatment advances. Annual Review of Public Health 2002;23:213-31.
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Our ADHCC and its impact thus far have b een analyzed in several ways:
- Our state's Department of Aging is mandated to make an unannounce d visit to an ADHCC approximately 90 days after it is licensed to confirm that the center is in compliance with state regulations. When the inspection team visited our ADHCC, we received no deficiencies, and the team sent us a letter commending our "outstanding program."
- We received similar results and accolades from the s tate's Department of Education when its team made an unannounced visit to evaluate our nutrition program and fr om the Department of Health Services when it inspected our patient assessments and Medicaid billing process.
- The Downtown Breakfast Club, a group of real estate developers, architects, engineers, contractors, and f inanciers that meets monthly to shape a vision for development of our city's center, gave our facility its 24th annual Rose Award for enhancing the quality of life of our city.
- Our local Alzheimer's Association ch apter has designated our center a model program and a partner in its training program on a variety of topics fo r staff from other adult day care programs.
The true "bottom line" of the ADHCC, however, is expressed by t he experiences and feedback of participants and their families. See "Progress Notes," and "Testimonials," for s ome flavor of this.
Interestingly, as well, the future of ADHCCs appears even brighter when considering possible advances in treatment of Alzheimer's disease in coming decades. For how an ADHCC is likely to relate t o the future, see "A Growing Need," above.
Martha Spinks, MSW, PhD, is Executive Director of St. Barnabas Senior Services of Los Angeles, the parent organization of the S. Mark Taper Foundation Adult Day Health Care Center. She is a re tired Lieutenant Colonel from the U.S. Army, with degrees in psychology and social welfare. She is an instructo r at the University of Southern California in public administration and systems management. For further informa tion, phone (213) 388-4444, extension 220, or visit www.saintb -la.org. For more on the design elements of the ADHCC discussed here, see Nursing Homes/Long Term Care M anagement, April 2004. To send your comments to the aut hor and editors, e-mail firstname.lastname@example.org m. To order reprints in quantities of 100 or more, phone (866) 377-6454.