By Jeni Miller
When patients with memory care needs are hospitalized, case managers often are the first — and sometimes only — point of contact to discuss transition options. When the transition includes moving into a memory care community, it is important for patients and their families to know what to expect.
According to Michelle Cornelius, LMSW, EdM, vice president of memory care for Cogir Senior Living USA, families usually are unprepared for this transition. Often, this is due to a lack of understanding on placement in memory care.
“When someone moves from the home into assisted living, it’s different. Into memory care, it’s not a downsize, but rather it’s a care need,” Cornelius explains.
There are several difficulties families face when their loved one is moving into a memory care community. It is helpful for case managers to understand these challenges.
“Even in cases where people know that some type of care is coming, it is still often a surprise when someone is hospitalized or in a situation that turns out to be a catastrophic event,” Cornelius says. “Families had maybe not looked at memory care communities yet or may not know what they are looking for or what they want. Suddenly, they are having to make decisions during a very emotional time.”
When a loved one is in the hospital, it can be even more difficult to reconcile the emotional unpreparedness with the time crunch of a discharge and transition. Families often believe they cannot take the time needed to gather information as they would under more favorable circumstances.
In some cases, the decision-making process may seem even more disjointed because the spouse or child is used to making life decisions with their hospitalized loved one. “The family member might be used to discussing all of these decisions with their mom or their wife, but that person is not capable of participating in that decision-making process anymore,” Cornelius notes.
Case managers can provide space for the families to better understand what they are going through and help mitigate the challenges of otherwise difficult circumstances. Some case managers have found it best to connect families with a senior referral specialist who can meet the family in person and take them to visit memory care communities.
“It’s good for case managers to know some referral specialists and keep a list,” Cornelius says.
Memory Care Misconceptions
Misunderstandings about memory care abound, not only for families and patients, but for case managers, too.
“Families imagine that if their person is in memory care, that means that they’re no longer a caregiver, and that’s just not true,” Cornelius says. “Of course, some are relieved to believe that, but that person will always need you as an advocate. No one can provide care just as you do.”
On the other hand, some family members worry the facility will provide better care than the family. “Families just need to understand things will be different,” Cornelius says. “Some things will be better at a memory care community, but even though they are skilled at working with a person with dementia, they still don’t have a deep relationship with that person. Not to mention, sometimes even the memory care community can’t get someone to shower or do an activity if they don’t want to do it.”
Case managers also might want to dispel another misconception about memory care facilities: that all facilities are the same, and it matters little which one you choose.
“Every community has its own culture and personality,” Cornelius notes. “Each family needs to find the one that feels right to them.”
Asking good questions and listening to the responses can help case managers discover why families might be resistant to memory care placement.
“Sometimes, what I see is that case managers — and other medical professionals — take what the family is saying at face value when really they need to explore a bit more,” Cornelius says. “It helps to dig deeper into the patient’s abilities, especially when the family understandably wants to portray the person in as dignified and respectable a way as possible.”
While it is natural for the family to want to cast their loved one and his or her abilities in the best light possible, it can hinder the placement process if there is more going on behind the scenes.
“Families may not talk about their person’s ‘worst day’ and where they may need the most help and support,” Cornelius notes. “If a case manager doesn’t dig deeper, then they aren’t getting the full picture. When a family member shares that their mom can still use the phone, that may not be the whole picture. Follow up by asking, ‘When is last time she called somebody, not the last time she answered the phone?’ If the family says that mom is doing well and can still get to the grocery store, ask what she might do if the road she normally takes is closed and there is a detour. If family lives out of town, yet regularly checks in with mom to make sure the fridge is stocked, they still may not realize that perhaps it’s stocked but all expired.”
The family might not know the extent of the situation. Therefore, case managers should practice asking these questions and using their investigative skills to learn what is really happening.
The Grief Cycle
When a loved one enters a memory care community, the family often experiences genuine grief, as though the person they have known is no longer here.
“There are so many losses that families experience,” Cornelius explains. “It’s the loss of a family member that they’ve always known, of relationships and hopes for the future. This can cause families to resist placement for reasons [such as] they don’t want to be in bed alone or because the husband is the only one who calls the plumber. Sometimes, it’s a financial loss, which can be significant. Losing a nest egg can be a real financial concern.”
Cornelius acknowledges there is an “ambiguous loss” for many. It helps when the case manager can help name it for the family. “Case managers can do this by engaging in conversations about these fears and what kinds of support they’ll need to get through the process,” she says. “We need to stop and remind ourselves that this is the first time a family is going through this. I may have [experienced this] a thousand times before, but they haven’t. I need to start where they are.”
Help Families Prepare
While case managers are busy with their everyday task list, it remains important for them to help families build a team to support them and their loved one.
“Just saying that a person needs memory care is vague,” Cornelius explains. “Instead, they can truly help the family decide what is important in finding the right choice and develop a broader understanding of what memory care is. Case managers understand that not all communities are the same, so it’s helpful to impart that to the family.”
It also is beneficial for the family to understand what visiting might look like in a memory care community — and even how their caregiving role may change.
“The hardest concept to grasp is that you don’t have to be there all of the time,” Cornelius shares. “A short visit can be just as successful as a long one. You might visit for 10 minutes, bring flowers, or do an activity, and then go. You want the person to feel good when you leave. I also advise families to just go when it is time, and don’t say goodbye. Make sure your loved one is engaged and talking to staff. It can be a hard concept for families to get used to because they’re used to saying goodbye.”
Furthermore, expanding the definition of a caregiver can help families adjust to the new way of life for their loved one. “Scheduling appointments, getting mail, checking in — even if from another state — still makes you a caregiver, even if you’re not as hands-on,” Cornelius says.
For spouses, it can be challenging to reconcile. “They’ll say, ‘I took a vow of in sickness and in health — I vowed to take care of this person.’ I tell them that if this was a physical ailment, wouldn’t you get them the assistance they need?” Cornelius asks. “If you would get someone assistance, it also makes sense to do so now because this person does have a physical illness but it’s in the brain, so you can’t see it. It still warrants involving a professional team that can provide care. A case manager might be one of the first people in this process to digest all of this information with and discuss the implications of the diagnosis. Oftentimes, the doctor’s office just refers to the Alzheimer’s Association and that’s it. Families may need more support.”
Providing a family orientation also is beneficial. Case managers can help guide families to understand this placement is not just a downsizing of sorts but is due to their loved one’s legitimate memory care needs.
“Memory care is not just downsizing more than assisted living,” Cornelius explains. “Sure, when a person moves into memory care, they don’t need to bring their furniture. They aren’t trying to downsize the home, but rather are moving into a room for the purpose of specialized care.”
Cornelius suggests it is important to talk to families about what this all looks like in practice. For example, explaining to the family that rather than bringing their loved one’s jewelry from home, they may want to buy costume jewelry so precious items are not lost.
“Anything that is irreplaceable shouldn’t be brought into memory care,” Cornelius says. “If the person loses weight or puts the item down, they might lose it.”
Case managers also can share these tips:
- Make copies of photos instead of sending the only copy.
- Make your loved one comfortable but not overwhelmed. Seasonal decorations can come, but then they need to go.
- Lock up any toiletries.
- Practical items like snacks, a new robe, socks, new clothing, and similar items are especially thoughtful. Things tend to get lost, and clothing might wear out faster in the hotter water the facility uses for washing.
- Always put names on things.
- Avoid bringing in new devices. If a patient is not used to something now, they will not get used to it. This includes items like hearing aids.
As difficult as it is to hold these discussions with families, it helps them see a realistic point of view. In a compassionate way, case managers can help families think through how they might handle future scenarios by teaching them to ask, “To what end are we doing this?”
“For example, if the family member in memory care needs a colonoscopy or develops cancer, it’s reasonable to ask, ‘To what end would we have them go through treatment? What is the expectancy? Is it worth having them go through that process?’” Cornelius notes. “When you put it all in these terms, it becomes easier for families to see a way forward.”
Engaging in these difficult but necessary conversations with families ahead of time is something case managers are well-suited to handle.
“Case managers are sometimes the first person families are working with on this,” Cornelius says. “It’s an opportunity for the family to learn what taking care of their person is going to entail. Truly, the case manager is in such a powerful position, whether they realize it or not, with these families.”
When patients with memory care needs are hospitalized, case managers often are the first — and sometimes only — point of contact to discuss transition options. When the transition includes moving into a memory care community, it is important for patients and their families to know what to expect.
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