Care partners or family members who are also direct caregivers of a loved one with cognitive decline may find it difficult to consider what will happen when the current care arrangement is no longer tenable. This leads some to do nothing until faced with a crisis. Others (recommended) think ahead and prepare by conducting research and putting a plan in place for when it will be needed.
This month, we build upon our last newsletter by offering suggestions on how families can prepare for a potential change in living arrangements. Because while it’s true that a loved one experiencing cognitive decline may be “stable” for some time, it’s important to acknowledge that their state of cognition will eventually decline.
Examples from our clients include when personal hygiene becomes problematic because a loved one resists bathing or dressing, wandering that leads to safety concerns, physically aggressive outbursts, and when in-home caregivers are just not enough to meet the needs.
Starting the research process early provides greater time and opportunity to evaluate settings based on defined criteria and their relative importance to both the loved one and the care partner or family. Further, by assigning a weight to each criterion, you can rank your eventual list of choices based on what matters most. Having three options to choose from is ideal because when a change is necessary, your first (or second) choice may be unavailable.
Some things to consider…
Location
It’s understandable that physical proximity to the family is high on everyone’s list of priorities; family members hope and intend to visit often and distance matters. But this can be tricky.
In my experience, it’s more important to consider criteria that affect the loved one’s day-to-day experience, such as programming and appropriately trained staff. Any inconvenience you may encounter in the beginning because of proximity will become less significant over time.
Visiting too often can even have negative effects. When James moved into a memory care unit, his wife Julie’s constant presence interfered with his ability to bond with staff and adapt to the routine of receiving care from others. Each time he saw Julie, he thought she was there to take him home. When she would leave, he became agitated and spent hours looking for her. Eventually, he found his way outside the locked doors and into the neighborhood. This resulted in local police involvement and precipitated admission to a geriatric psychiatric hospital. Upon discharge, the only option was for James to move into a much more restrictive environment.
Admission Criteria
Usually, when considering a new community, the goal is to identify the least restrictive environment in which a loved one can succeed (an Assisted Living with Memory Care, for example).
However, it’s important to realize that certain criteria must be met to enter a given setting. And while objective and quantifiable cognitive testing done upon inquiry may permit admission, if a loved one’s cognition deteriorates beyond a defined point later on, that option may no longer be available. When this happens, long term care / traditional nursing home care may be the only alternative.
Ideally, a long-term-care community with internal “neighborhoods” dedicated to care for individuals experiencing cognitive decline is the best environment. But these settings are relatively rare. The individual can still receive quality care in a traditional nursing home setting, but the dedicated programming designed for people with cognitive decline and the specialized training of the staff members to promote engagement may be missing.
In any setting in which a loved one transitions, it is important for the family and the staff to work closely together to customize a care plan to the individual needs of the loved one, minimizing the need for future moves.
Availability
In many cases, waiting lists for all levels of alternative living communities can be several months long. That’s why we recommend being placed on a list even before you may feel ready. If an apartment or bed becomes available and is offered, you may be able to refuse once or twice without moving to the bottom of the list.
For example, we had a client who lived alone at home in New England. Winters led to isolation due to her fear of falling outside. She was in her late 70s when she first placed herself on a waiting list for a Continuing Care Retirement Community. She refused several times, but three years later, she finally felt it was time and was able to move onto the campus. She is very happy in her new home and participates in all of the wonderful programming her community has to offer — despite any inclement weather!
Overall, and while the individual and family may not feel entirely ready, entering one of these settings sooner rather than later often leads to a more successful adaptation. If you wait too long and the transition fails, a more restrictive environment may be the only alternative.
Medical Care and Oversight
Some communities have campus-based primary care that includes home visits, dentistry, and podiatry. Eventually, as a loved one’s cognition declines, not having to transport them to physician appointments can be a great relief.
A community may also have a consulting neurologist, psychologist, social worker, and psychiatrist that can offer services on campus. Having these specialists readily accessible can become instrumental if a loved one progresses and exhibits difficult behaviors.
Community Feel
There are any number of interrelated factors that add up to the overall atmosphere of a community, all of which should be high on the priority list. These include (but are not limited to) culture and philosophy of the organization; quality of the memory care services; structured activities / engagement planning for the residents; staffing, including ratios of professionals to residents; level / type of preparation of the staff; and approach to managing behaviors.
Further, a team that clearly articulates a plan for integration of a new resident while taking into consideration how reluctant the caregiver might be to let them go, is a good sign of culture, philosophy, skill level of the team and quality of care. In the case of one of our clients, her husband was initially very reluctant to let his wife move. However, after he developed a strong bond with the social worker facilitating his wife’s transition, he decided that as painful as it was to let go, he would follow her advice for visitation and for his mutual participation in structured activities. It was one of the best transitions I’ve ever witnessed. I was so, so grateful!!
When clients and their families visit facilities, meet the admissions team, tour the units, interact with the staff, and interact with residents and their families, they can get a good, first-hand feel for all the criteria noted above. In my experience, families seem to always know if the environment is a good fit for their loved one.
Summary
The transition to a community outside the home can be a painful and emotional experience for families, especially if the initial goal was to care for their loved one at home for the rest of their lives. Such goals are wonderful, but as things progress, they may become impossible. At that point, a transition is inevitable.
Those families that have been proactive in researching, planning, and prioritizing their preferences tend to experience the best outcomes for all involved.