My colleague, “Trina”, has a mom who was recently diagnosed with “early stage” or mild dementia.
Trina works in healthcare and is well-versed in person-centered care, which encourages us to honor the individual and what is important to her or him. In her work, she promotes care partnership as a person-centered model for how people with dementia can obtain support from people in their lives, in the spirit of collaboration. Yet, she feels that she is failing at care partnership with her mom.
She poses this question to me, “How can you have a care partnership when a person with dementia does not want a partner?”
She is frustrated because her mom does not want her help, thank you very much. She is fine, she tells Trina. Mom does not want her to be involved in her care. Mom has denied Trina her offers to attend medical appointments with her. Trina had presented this as a way her mom could have an advocate at her side. Someone who could help her ask the right questions. Help her remember the torrent of information that would be given to her in an appointment. Remind her mom to tell the doctor that she has been feeling dizzy. Her mom assures her that is not necessary.
After her mom was diagnosed, Trina had visions of sitting down with her mom and talking through her goals, wishes, preferences. Collaboratively coming up with ways for her mom to LIVE life, with some adaptations, but fully. Seeking out supports that can help her to do the things that she wants to do. Being with her to fight the tragedy narrative of dementia by focusing on joy and living. Being a care partner.
But her mom doesn’t see the need for any of that. She is fine.
Yet, Trina explains to me, she is not fine. She has forgotten to tell doctors important information about her medical history, resulting in a misdiagnosis. She has been forgetting to take her medicine. Trina sees that her mom has started limiting her socializing and stays in her house most of the time, by herself. Trina suspects her mom is isolating because she feels embarrassed, scared, and overwhelmed. Trina does not think her mom is in imminent danger. But she also does not think she is doing great.
Trina laments, “If only she would let me be her partner. I could enable her to live better. Instead, I fear she is disabling herself.”
How can you have care partnership when a person with dementia does not want a partner? Can you?
It seems that there needs to be partners to have a care partnership. However, not every person with dementia wants to have a partnership, or has a partner. For some people with dementia, they do not have a family member or friend who is able or willing to be their partner. Some of these people navigate dementia by themselves, or seek out professional care partners.
But what about people with dementia who have able and willing family members or friends available but they just don’t want to have a care partner?
Why would a person not want to have a care partner, if there was one available and willing? Some possible reasons….
- It could be that the person has always been an intensely private person, so this is not a natural or preferred way of relating.
- It could be that the person is truly in denial about their diagnosis of dementia.
- It could be that the person has challenges cognitively processing their diagnosis, so that it is difficult for them to understand its depth and impact.
- It could be that the person is adamant about not accepting help or support from others.
- It could be that the person with dementia is trying to protect their potential care partner. They don’t want to be a burden to them. They don’t want to bring them down.
- It could be that they don’t trust the potential care partner. They might not be comfortable with that person. They might be fearful that she or he is going to take over their life. They might have had a rocky relationship with that person.
- It could be that they have fears about losing their voice, and are unsure about what a care partnership would mean for their desire to be self-directed.
Yet, a person living with dementia might really benefit from having a care partner. Actually, they might need one. It is difficult to do dementia alone.
Is honoring the choice of a person with dementia to not participate in a care partnership a way of living out person-centered values? Is Trina still a care partner even though her mom does not want one? By Trina’s mom not participating in a care partnership, is Trina feeling more like a caregiver instead of a care partner?
Are there ways that we can approach care partnership so that a person with dementia might be more open to it?
Do we adequately talk with people living with dementia about care partnership? Are we sometimes afraid to suggest to a person with dementia that a partner is helpful and might even be needed? Can we have conversations with people with dementia about who they would like to have as a partner? We should not assume it is a family member. It might be a friend. It might be a professional.
Perhaps conversations about partnership need to happen before we have dementia, or very early in dementia, like when a person is first diagnosed. Perhaps we all need to have these conversations, well before we might be diagnosed with dementia. We have similar conversations about advance directives, where we choose a person to serve as our decision maker at the end of our lives. But what about someone to support us to LIVE, if we develop dementia?
If we do not have these conversations, we might find ourselves in situations in which there is no “partnership” until the person with dementia has more difficulty with daily life and decisions. Then we, as “care partners” might shift to a relationship in which we are having a larger role in a person’s life, maybe even making decisions on their behalf, and because there really wasn’t a partnership before, we are struggling with how to be a care partner. Maybe then we are less sure about what the person with dementia really wants, because we never really had the opportunity to be a partner. Maybe we even make decisions for that person with dementia that are not really in line with what they want, because we didn’t have that practice of collaboratively learning what they want.
How do we have these conversations earlier so that care partners are more comfortable with the idea of partnership and can talk about what it means to them? Where both parties are prepared to know how to talk with each other, and listen to each other? How do we help care partners communicate with each other so that they learn and practice seeing each other’s perspectives? How do we help care partners define what their care partnership looks like?
As we think about how to have these conversations about care partnership, it seems important to consider the ideal elements of a care partnership. What are we agreeing to? What are some of the building blocks? Maybe they are some of these:
- The person with dementia, the person needing more support, is willing to accept support, and is willing to engage in honest discussions with the care partner about their needs. This might include being willing to share details of their medical or health status that would be helpful for the care partner to know. If a person needing support chooses to not engage in honest discussions, or share their needs, the care partner might start to engage in behaviors that are perceived as “overstepping”. This might include communicating with a medical professional without the participation of the person with dementia or making decisions for the person based on what the care partner thinks is the best thing to do.
- The person offering support is willing to listen to the needs and wants of the person needing support. They are willing to try to understand what the person with dementia is experiencing.
- The person offering support cannot assume that a person living with dementia can or can’t do something entirely based on their diagnosis or age. The person needing support is open to the idea of adaptation.
- The person offering support is willing to work WITH the person to achieve their goals, and does not adopt an “authoritative” stance with the person needing support. This means that they are not trying to manage or control the person, such as by automatically “telling” the person they cannot do certain things, or preventing them from doing things. To be fair, there are times when a care partner might need to make these difficult decisions, like preventing a person from driving when they cannot drive safely, but these decisions are ideally made in collaboration, and keeping in line with what is important to a person (e.g. “I know it is important for you to have coffee with your friends every Wednesday so I have set up a way for you to get there and it is a sweet ride!”).
This brings me to trust.
- For both “parties” there needs to be trust. The person needing support has trust that the other person is well-intentioned and honest. The person needing support trusts this person with sensitive information. They trust that the person is not intending to harm them, or cause them distress. They trust that, even when a care partner might tell them something they don’t want to hear, they are doing so out of a caring relationship. They might trust that the care partner is seeing something about a situation differently, and their perspective might be valid.
- The person offering support trusts that the person needing support is being honest about what they need. They trust what is important to a person with dementia. They trust that the person needing support has a valuable perspective, and it needs to be heard.
Which brings us to empathy.
- It is hard to be diagnosed with dementia. It is hard for people to accept the challenges that dementia brings. People with dementia live with a lot of stigma, including ongoing messages that they are “not there” or can’t do anything anymore. It is understandable that a person with dementia might not want to talk about it, or share it with others. They are doing their best.
- It is hard to support, or try to support, a person with dementia. A care partner has to adapt to the changing needs of a person with dementia, and to hopefully do this with patience, humility, and openness. Care partners inevitably will make mistakes, and learn from them, and try again. They are doing their best.
Let’s not forget about reciprocity as the basis of a care partnership.
- A care partnership is not always even. Sometimes there is more giving than receiving. It is important for care partners to consider reciprocity and how both can practice it. Maybe talk together about these questions: How can the person with dementia give as well as receive? Even when the person with dementia is needing more support, how can they support the other person? How can the person offering support seek and accept support from the person living with dementia? When the partnership is less balanced, so that the person with dementia is receiving more support, how can they partner together to ensure that each live with dignity and well-being?
What is Trina going to do? She is not sure. She said she is hoping that her mom will read this blog (ha!). Maybe she will try to talk to her mom more about it. Maybe she will ask questions and listen more. Maybe she will ask her mom about her understanding of her diagnosis and how she feels about it. Maybe she will ask her what is important to her. Maybe she will try to assure her mom that she is a collaborator, not an authoritarian. Maybe she will honestly share her feelings with her mom, that she is worried her mom’s discomfort in asking for, and accepting, help will ultimately cause her mom to have even a harder time than she already is.
Maybe Trina will need to accept that a care partnership is not yet possible. And it might not be. But she will just be there for her mom and still practice person-centeredness, honoring who her mom is, and her mom’s choice to not have a partnership, even though she is still an ally.