Alzheimer’s and Dementia Care: What Are Your Options?0 USER TIPS ADD YOUR TIP
Whether you’re looking for someone to help your mom run errands without getting lost and prepare meals safely as she starts to show symptoms of mild cognitive impairment, or you need to secure a spot in an Alzheimer’s care center for your spouse in the end stages of Alzheimer’s disease, finding dementia care requires some extra research and legwork.
“Whichever care setting you choose, it needs to be gauged to the level of your loved one’s dementia,” explains Mary Mittelman, DPh, director of NYU Langone Health’s Alzheimer’s Disease & Related Dementias Family Support Program. In the early and mid-level stages, it’s crucial to find a balance between how much the person with Alzheimer’s can still do independently, and how much help they need to stay safe, says Mittelman, who adds that the longer they can participate in brain-stimulating activities such as book groups and music classes, and the more daily-living chores they can still accomplish, such as cooking and taking walks, the better their quality of life will be.
But as the disease progresses, the special challenges of Alzheimer’s require an extra level of safety and security, especially as the person may start wandering, or walking away from home without any idea of where she’s going or how to get back, says Wendy Wells-Chanampa, dementia care educator and author of The Unseen Gifts of Alzheimer’s Disease and Dementia. “It only takes one time of trying to walk to the grocery store for something tragic to happen,” she points out.
Because of the additional safety concerns of people with memory impairment, it’s very important to find caregivers, whether in an Alzheimer’s care center or not, who are specifically trained in dementia care, says Nataly Rubinstein, LCSW, founder of Alzheimer’s Care Consultants, who has helped thousands of clients find the appropriate care. “A person with dementia may not be capable of using a call button when they fall in a traditional assisted living home, or of communicating when they’ve soiled themselves or need to bathe,” she points out. “A provider of dementia or memory care has to be able to anticipate these needs.” She also points out that it is common for adults with dementia to act out sexually, so it is important to have a system in place for dealing with those situations in an appropriate way.
Wells-Chanampa also explains that the personality changes, confusion, irritability, and sometimes puzzling behavior of Alzheimer’s and dementia patients requires caregivers who are able to come up with creative solutions to problems on the spot. “Whether in their home or in a facility, any caregiver should have special training in dementia care, and needs to be able to gently guide the patient without becoming angry or taking things personally,” she says. “They have to be creative problem solvers—if the patient is resisting getting dressed or eating, what new approach can they try?”
And though it can feel heartbreaking to place your parent, spouse, or sibling in a facility where he or she is surrounded by other people in various stages of dementia, Wells-Chanampa says there are social benefits to being around peers with similar challenges. “Even in their 80s and 90s, people will whisper, and they can be as cliquey as high school students,” she says. “If you bring your parent to a regular senior center or housing facility, and she hides food in her pockets or asks the same question over and over—behaviors very common for those with Alzheimer’s—the other people may avoid her or talk behind her back.” There is comfort in being around people who accept you and have similar cognitive abilities, she adds.
Experts agree that choosing the right caregiver or facility can be tricky for families; it’s easy to get swayed by the cheerful décor of the building or promises made by a sales manager; less glamorous touches, such as the training level of the staff, the range of memory-enhancing activities, and the ability to age in place as memory needs change, are far more important factors. Hiring a geriatric care manager or Alzheimer’s care manager who knows the right questions to ask and has insights into the different levels of care can be a worthy expense (look for someone with a social work degree, and ask for references). You can also meet with a social worker at the dementia or Alzheimer’s care center at your local hospital to help you plan the next move.
Here are 6 different Alzheimer’s care options, and what you need to know about each:
Adult day care for Alzheimer’s and dementia
When you need it: When your loved one is still living at home or with a relative, but can benefit from additional socialization and activities; appropriate for all stages of dementia, as long as the patient is still able to leave the house for a few hours.
What it is: Adult day programs are often run by YMCAs, senior centers, rehab centers, and assisted living facilities. These nonresidential drop-in programs provide stimulation in the form of conversation and friendship, and offer activities such as seated exercises, arts-and-crafts, and music for those with Alzheimer’s or other dementias, while providing a few hours of respite for their caregivers. Similar programs are available for adults without neurological challenges, so be sure that the program you choose is designed for those with dementia and has a high enough staff-to-participant ratio to keep everyone actively safe and actively engaged.
Expert tip: “If you can, drop in unannounced so you can see firsthand what’s going on at the program,” Wells-Chanampa suggests. Just eyeballing the calendar to see what is on the agenda for the day isn’t enough, since some programs may not actually follow through with all they have planned, she adds. “When you’re there, see if the participants are engaged and happy, and if the staff is speaking with them in a respectful way, rather than just talking down to them,” Wells-Chanampa adds.
Alzheimer’s and dementia home care
When you need it: At any stage of dementia; the level of the care will depend on the needs of the person.
What it is: A live-in or part-time home health aide assists your loved one with everything from grocery shopping and cooking to bathing, dressing, and toileting. In addition to helping someone stay in their home, the aide can provide conversation and companionship to keep their brain stimulated.
Expert tip: It is crucial to find an aide who has experience working with Alzheimer’s patients or is willing to do additional training, so she knows how to deal with behavioral challenges without getting angry. “If they don’t understand dementia, they may inadvertently respond in a way that creates agitation,” Mittelman says. Also, ask the social worker at your hospital or a geriatric care manager to come up with a personalized plan of activities for the aide to do with the Alzheimer’s patient, Rubinstein suggests. Depending on the degree of cognitive impairment, previous lifestyle, and interests, these can include tasks such as going for an (escorted) walk to get the newspaper, sorting silverware, folding napkins, making the coffee in the morning. “These seem so simple, but even just a few minutes of a focusing on a household task can keep the person engaged and stimulated,” she says.
When you need it: At the early stages of dementia, when a person with Alzheimer’s needs help with preparing meals, housekeeping, and medication management, but is still well enough to keep some level of independence. Keep in mind, however, that assisted living is not a long-term solution. Only a memory-care unit within an assisted living facility (see below), or an assisted living facility devoted to dementia care, can reasonably keep a resident safe and secure during the middle stages of Alzheimer’s and dementia.
What it is: There is a wide range of facilities, and licensing varies from state to state, but in most, the individual or couple lives in a private room or apartment; meals are provided in a communal dining room, and there are social activities and outings planned throughout the day to provide stimulation, social support, and health care as needed. Residents pay extra for additional levels of care, such as medication management and help bathing, dressing, and being escorted to meals. (Related: The Hidden Costs of Assisted Living.)
Expert tip: Rubinstein advises you not to be swayed by colorful brochures and fancy web sites, but to look at each facility with a critical eye: “What you see online is often not what you get,” she says. She also points out that you should have a clear idea of what your loved one with dementia is capable of doing: “If your parent is not well enough to to take that bus ride to the museum or attend the movie nights and book talks, consider whether it’s worth paying extra for a facility with those features.”
Memory care units or special care units
When you need it: When the patient is no longer capable of living independently, is in danger of wandering, or needs full-time supervision.
What it is: Memory-care units (also called Special Care Units, or SCUs) are usually located within assisted living facilities, with a simplified layout that is easy for those with dementia to navigate without getting lost, and locked doors so that they can’t wander. Staff are trained specifically to help with the behavioral needs of those in the later stages of dementia. Activities may include reminiscing about childhood, pet therapy, and listening to music. Because of the higher level of 24-7 care, these units generally cost more than assisted living.
Expert tip: Look for a facility with a low staff turnover rate, advises Rubinstein. Though it’s inevitable that aides will come and go, having a few familiar faces who will really get to know each resident is important for consistency and stability. “When you visit, look closely at whether the residents look clean and well-fed,” says Rubinstein. If you are moving in to assisted living as a couple (or finding a place for your parents), be sure to ask how long the facility will allow the couple to remain together if the person with greater needs moves into the SCU. And take a close look at the daily schedule—there should still be plenty of joyous activities planned through the day, even for those in the later stages of dementia, says Mittelman.
Nursing homes for Alzheimer’s and dementia
When you need it: When the person with Alzheimer’s needs round-the-clock specialized care with eating, bathing and toileting.
What it is: Nursing homes, which may be freestanding or located within a rehab center, are considered an end-stage residence for dementia patients, when their needs are too great to be handled at home with live-in care or in an assisted-living facility. Nursing homes are licensed and regulated by the state and provide medical and nutritional services with a skilled nursing staff.
Expert tip: Not all nursing homes are specifically geared to patients with dementia, so Alzheimer’s patients who become aggressive are more likely to be medicated, says Wells-Chanampa.
Hospice care for Alzheimer’s and dementia
When you need it: In the last six months of life, when the focus is on keeping the patient comfortable and safe rather than prolonging life through medical means.
What it is: Hospice care can be provided either in a specialized setting, or hospice caregivers can be brought in to the patient’s home or residential facility. The main purpose of hospice care is to provide care, comfort, pain-relief, and dignity to those who are terminally ill—and support to their families. Memory care at this stage may include simply talking or singing to the patient to soothe her in her final days. Because those with Alzheimer’s tend to get agitated later in the day, soothing the patient with massage, music, or medication may help ease them through the evening.
Expert tip: “If you can bring hospice care into the patient’s own home or assisted living facility, it can be very comforting to them to stay in a familiar environment,” says Wells-Chanampa.