Portal de Periódicos da CAPES

Programs for Young Patients Can Help Them Achieve Life’s Milestones

2017; Elsevier BV; Volume: 18; Issue: 12 Linguagem: Inglês

10.1016/j.carage.2017.11.001

2377-066X

Joanne Kaldy,

Geriatric Care and Nursing Homes

For years, post-acute and long-term care facilities have positively affected the lives of older adults. Increasingly, they now are helping younger people deal with devastating illnesses and injuries, so they may pursue purpose and independence. The challenges — physical, intellectual, emotional, and financial — often are significant for these individuals. It takes innovative, visionary, creative facility leaders and care teams to meet the needs of this nontraditional population, and a growing number are stepping up to the plate. Take Inglis House in Philadelphia (the long-term care community of the Inglis organization), where the average residents are in their mid-40s. Many are long-term residents after a life-changing event, such as a car or sporting accident, left them disabled. “There is a different trajectory for young residents. We are focusing on helping them have a full life and making them as independent as possible,” said Dyann Roth, the president and CEO of Inglis House. She noted that the younger residents look forward to goals such as completing their education, getting married, or pursuing a career, which are part of the older residents’ past. To successfully serve younger residents, facility leaders and staff must be able and willing to address these goals. “We have one resident who initially went into a nursing home with all geriatric residents. She said she lacked a sense of future there,” said Roth. “A critical thing we do is help each person define his or her life and future.” Because they have different goals and interests, younger residents often have unique needs. As Carrie Kane, an administrator in long-term care at Pennsylvania-based Good Shepherd Rehabilitation, told Caring, “The challenges depend on the type of disability each individual has.” Her residents are predominantly younger individuals who have experienced a spinal cord or brain injury. “Younger people who became disabled as a young adult or teen tend to stay at the age of the injury in their minds,” Ms. Kane said. As a result, they can get bored easily, so “we need to keep them engaged and occupied throughout the day.” Especially soon after their injury, she added, the resident and the family often are dealing with grief, denial, anger, and other problems. Depression is not uncommon, and this must be managed promptly. As for the grief, Ms. Kane cautioned that there is no real timeline for this. “I’ve had residents who have been disabled for several years, and their families still hope they will get better. They actually may improve, but the achievements are smaller and don’t necessarily result in the person regaining function or independence.” “Younger people who became disabled as a young adult or teen tend to stay at the age of the injury in their minds,” and as a result “they can get bored easily.” Even residents who previously had strong families and social networks may feel alone when they enter a facility. “Family and friends often fall away because it is difficult for them to see someone they care about become disabled,” said Ms. Kane. They may feel awkward or guilty, and friendships that were based on shared activities or experiences may no longer be relevant or comfortable. “We try to give residents a sense of community and help them understand that they are not alone,” Ms. Kane told Caring. As for family members, she said, “We make them part of our Good Shepherd family. We want to involve them and help them with their struggles and problems. I have an open-door policy, and families can come see me any time.” Like other young people, following the rules isn’t always a priority. “We can monitor their activities on campus, but I know we have residents that leave the premises to party. That is their right,” Ms. Kane said. She has found that the best approach to keeping residents safe is to have an open dialogue. “We don’t want them sneaking around or hiding what they do. We educate them about the risk of certain behaviors such as smoking and unprotected sex, and we encourage them to let us know when they need help or have questions.” Younger PA/LTC facility residents often want active sex lives like their peers in the community, Ms. Kane said. “We have a couple who met here and married. It happens, and you have to be prepared for this,” she said. She added that she has had residents with significant others in the community who come for visits. “They want privacy, and we try to arrange that. It can be a bit more challenging if they want to spend the night, but we try to deal with that. We want to be flexible and address situations as they arise.” “When we first opened, I brought residents together, and we talked about what is appropriate behavior toward the opposite sex,” said Roger Bernier, president and chief operating officer of Chelsea Senior Living in Fanwood, NJ. “We came up with rules we could all agree on, such as residents of the opposite sex shouldn’t go into each other’s rooms.” They had one resident who would sometimes spend weekends at a hotel with her boyfriend, but they got her parents’ permission in advance. “There is lots of supervision at dances and social events. We want to protect residents so they don’t feel like they have to do something they don’t want to, but sometimes residents form relationships with each other, and that is fine,” Mr. Bernier said. Diet is another challenge, Ms. Kane said. “We have an amazing, dynamic dietitian. She is in tune with all of the residents, their food preferences, and their special needs.” Staff are constantly educating residents about food and healthy eating and how to make smarter choices. They can’t control everything residents eat, particularly when they are off campus, but Ms. Kane’s team tries to educate residents about the negative impact that fatty diets, sugary drinks, and other poor dietary choices can have on their health. Inglis House offers more than 100 activities and events every month, including musical and other performances, art exhibits, and guest speakers. “We have a chorus for those who want to sing,” Ms. Roth told Caring. “We bring in educators to help people get their degrees or GEDs. We have wheelchair ballroom dancing.” Like many facilities, they have a couple of resident cats and often bring in other pets for therapy, companionship, and fun. “When we find out someone has specific interest, we try to make it happen,” Ms. Roth said. For example, one resident wanted to brush up on her French, so the staff found a college student to come in and speak French with her. Chelsea Senior Living has monthly fireside chats, where residents hear about facility news and have a chance to share suggestions and ideas. Bullying is a regular topic at these events. “We discuss the need to respect each other and be kind to others. We encourage residents to make lots of different friends, and we create activities where they can meet, share common interests, and develop bonds. We don’t want them to feel isolated or spend too much time alone,” said Mr. Bernier. The facility holds weekly events, including bowling night and trips to the store for snacks. Additionally, there are young men’s and young women’s clubs, and the residents enjoy special events such as summer concerts and quarterly dances. “We have a singing group — the Village Voices,” said Mr. Bernier. “It started with a karaoke night that expanded into a singing group. They go to assisted living communities in the area to perform, and they’ve even been invited to perform at the city’s annual Christmas Walk.” It’s not about the singing, said Mr. Bernier, as much as learning words, getting physical activity, and having fun. Computer technology enables residents to not only connect with friends and family, but also take classes, pursue other educational opportunities, and even hold jobs (such as web design and data entry). “People want to engage electronically because they can’t always engage physically. That is a critical social connector,” said Ms. Roth. “We are very tech savvy here,” said Ms. Kane. “We have high-end communication devised for nonverbal residents, computer access labs, state-of-the-art electronic wheelchairs, and more. All the televisions are internet-based, and residents can use these for popular activities such as sending emails and watching Netflix.” At Inglis, they have had an adapted technology lab for more than 20 years. They have a variety of input devices, including eye-tracking technology, which enables disabled residents to operate computers and other technology with their eye movements. “Half of our residents come to the computer lab for technology services,” said Dawn Waller, director of adapted technology programs at Inglis. “Many residents also have personal devices in their rooms, and we support nearly 200 devices facility-wide — from iPads to smart televisions that residents can use to send emails and search the web,” said Ms. Waller. Every resident room in Inglis House has free cable and Wi-Fi, and in-room internet service is available for a fee. Some wheelchairs are equipped to allow residents to control smartphones and Bluetooth devices with joysticks and mouth-operated controls. Not only are therapists at Inglis House trained in the use of adapted technologies, volunteers from the community come in regularly to help residents who might be intimidated by technology, or want to know more about all of its capabilities. “Residents love that the technology enables them to be more independent,” Ms. Waller said. They can send emails, shop online, take classes, and complete other tasks without the assistance from a caregiver. For people who often must depend on others for something as simple as drinking a glass of water, this independence can be tremendously satisfying and enhance self-esteem and quality of life. Technology helps residents stay in touch with family and friends. For example, one Inglis House resident, a grandparent who was severely disabled in an accident, can visit with her family across the country via Skype. “If not for this technology, this person wouldn’t be able to stay connected and see the grandkids grow up,” Ms. Waller said. For those individuals who have lost the ability to communicate and socialize the way they used to, technology can give them back their lives. For instance, Ms. Waller said, “We have a resident who is a college-educated artist. His speech is impaired, but online, he is like every other guy. No one knows he is disabled or judges him by his speech or wheelchair. This can be very liberating for young people with disabilities.” Like their community-dwelling peers, younger residents may want to view some adult content on the internet. “We accommodate that so they can do it with privacy and dignity and without judgment,” Ms. Waller said. After all, she said, Inglis House is their home, and “we want them to be able to live with as many of the same choices and opportunities you or I have.” Traditionally, PA/LTC family members mean older spouses and adult children. With younger residents, they may have spouses who are working and leading active lives, children who are still in school or even in diapers, or parents who are approaching or just reaching their senior years. “It makes the process of family inclusion interesting,” Ms. Roth said. “We treat everyone gently and try to learn the dynamics of each family.” Carolann Garafolo, the executive director of Chelsea Senior Living, added that dealing with families at admission is a bit different for younger residents. “Letting go of a child is more difficult than putting an elderly parent in a nursing home or other facility,” she said. The guilt and financial anxieties often are heightened, especially when the child isn’t eligible for insurance coverage of some kind. “We assume that everyone we move in will be a long-stay resident, and we provide financial counseling to ensure they have the means to stay here.” She added that many younger residents come with trusts because parents want the security of knowing their child will be cared for when they are no longer around. “Families expect that we’re here 24/7 for their child, and we are. They are comforted when they see that we have created a homelike environment,” Ms. Garafolo said. “We make holidays a big celebration for those who don’t go home.” She noted that some residents enjoy this so much that they choose not to leave for holidays. “We have to reassure the parents that it doesn’t reflect on them,” she said. In fact, it just shows that the residents have found their own home — a place where they have a life they enjoy. “Letting go of a child is more difficult than putting an elderly parent in a nursing home or other facility.” Care planning isn’t much different for younger residents, Ms. Roth said. The goal is always person-centered care and choice. “The majority of our residents can speak for themselves and tell us what they want, but we encourage advance directives and as much advance care planning as possible,” Ms. Roth said. “Perhaps the questions we ask and who we involve in the care planning process might be different for younger residents, as their goals — dating, getting married, going to school, getting a job — are unique.” Ms. Roth’s team assesses the interests, needs, choices, goals, and abilities on admission and quarterly. Ms. Kane said that the care plan for younger residents generally is more descriptive and involved. “It presents a full picture of the resident’s life and goals. It is a living document that changes as residents gain skills and interests, overcome challenges, and set and achieve goals.” Especially with residents who have progressive diseases, the care plan needs to be revisited as they become more sick or frail, their functioning declines, and they develop new complications or problems. It is not uncommon for younger residents to have some lofty goals, but “we will never say that their goal is unrealistic,” Ms. Kane said. Instead, the team at Shepherd will help residents see how different or revised goals might be more practical. For example, Ms. Kane recalled a resident who wanted to pursue a career that would require years of education and many hours of dedicated study. However, because of the nature of her injury, she was only able to focus or concentrate for short periods of time. The staff arranged for her to do a college placement test, and she couldn’t complete it. It helped her realize that she wasn’t quite there yet, Ms. Kane said. “It’s a fine balance,” Ms. Kane said. “We don’t want residents to be discouraged or devastated by failures. We never say no. We help them see for themselves what they can and can’t do.” Thanks to medical advances, young people with serious illnesses or injuries are living longer. As a result, it is likely that more facilities will see younger residents for both short and long stays. Others see younger residents or illnesses/conditions that are more common in younger residents as a promising niche market. Facilities should consider these steps to prepare to accept younger residents or better serve those they currently have: •Provide access to reliable, available transportation. “Younger residents don’t want to stay here all day,” Ms. Roth said. “We have a wheelchair-friendly neighborhood, but they need transportation to go elsewhere, and that can be limiting if we can’t provide that or public transportation isn’t available.”•Identify the area theaters, concert and sporting event venues, and other recreation locations that are wheelchair accessible, or make other special accommodations for customers with special needs. If residents want to go somewhere that isn’t accessible, talk to management at the venue about how to make a visit or activity possible.•Establish and maintain relations with psychologists, psychiatrists, and social workers in the area, particularly those who have experience working with patients who have progressive illnesses and profound disabilities.•Connect with organizations devoted to specific illnesses such as the Multiple Sclerosis Society, Huntington’s Disease Society of America, and the National Spinal Cord Injury Association. These organizations often have educational materials and other resources to help staff successfully serve individuals with these conditions. As with older residents, working with younger individuals requires creative problem solving and knowing each resident and why they think and act in a particular way. For instance, Ms. Roth said, when one resident didn’t want to use voice recognition software because he felt awkward about his speech difficulties, “We adapted the voice recognition technology to understand his voice.” Her facility brings in a variety of creative people to provide solutions. “We work collaboratively, but the resident is at the center of every question,” Ms. Roth said. While care for each resident is individualized, everything staff does is aimed at “helping everyone believe they have an opportunity for a wonderful, full, engaged life.” Senior contributing writer Joanne Kaldy is a freelance writer in Harrisburg, PA, and a communications consultant for the Society and other organizations. Younger residents can present clinical challenges for practitioners and staff who are used to working with elderly individuals. “Especially those who specialize in geriatrics and long-term care likely have gotten away from care for younger adults, and we’re not as familiar with disease processes more common in that population,” said David Smith, MD, CMD, president of Geriatric Consultants in Brownwood, TX. “When I’ve had younger residents, I’ve also gotten inquiries from the consultant pharmacist regarding regulations that don’t apply because these people have different illnesses and treatments,” he told Caring. Nursing staff may not be familiar with some of the medications younger patients take, and administering medications to residents who are more active and out of the facility more often can be challenging. Facilities that are just starting to accept younger residents may want to bring in one or more clinical staff members who have expertise in this population. “You need to recognize what expertise you don’t have,” Dr. Smith said. “Then the treatment team needs to reach outside of its own walls to family practitioners in the community and others who are familiar with caring for younger people and bring them into the treatment team,” said Dr. Smith. He added that the medical director and other clinical leaders “need to be lifelong learners and study up on the diseases and conditions these young residents come into the facility with.” He recalled copying articles on conditions a younger patient had and inserting them into the miscellaneous section at the back of the chart. He then instructed the director of nursing and floor nurses to review the material to get them up to speed on the specific disease processes. This increased both their expertise and comfort level to help care for younger residents. Dr. Smith noted that preventive medicine takes an enhanced role for younger residents, most of whom have longer life expectancies than older residents. “We have to implement preventive medicine tactics into their care plans,” he said. “That is something we don’t ordinarily do to a great degree with older residents.” For facilities that have both younger and older residents, there is value in bringing the two groups together. “For older residents, having younger people around energizes them. For younger people, interacting with elders broadens their view of the world,” he said. It can be empowering for elderly residents to offer advice or take a younger person under their wing, while younger residents can enjoy a surrogate parent/grandparent relationship that can make their adjustment to the facility easier. — Joanne Kaldy