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PART 2: Supporting caregivers and the most common case – living with dementia
Iyashi Care has
served over 200 patients since the beginning of the program, delivering
culturally-sensitive palliative care to Our Community’s older adults. This
partnership program between Keiro and Providence Health & Services provides
the patient and their family with an additional team of doctors, nurses, and
social workers that helps them navigate through their illness within a complex
health care system.
Two and a half
years into the program, we interviewed three Iyashi Care team members – Dr.
Yuichi Edwin Yanami, physician, Kanako Fukuyama, social worker, and Joshua
Northcutt, nurse – to share their journey. In this five-part series, we dive
deeper into how this program can benefit Our Community.
provides a personalized approach to each patient and family’s situation. What
works for one person may not work for another. Yet through these interviews and
stories, we hope to show the many different options and Iyashi Care
What the Iyashi Care team offers is to
support not only patients going through various types of illnesses, but their
family members who care for them. Specifically, what kind of support do you
provide for these family caregivers?
Kanako Fukuyama: A lot of validation for these
caregivers. Often times they need it. They’re not sure if what they’re doing is
right or enough. We also discuss future care options like, “If this happens,
then let’s consider this option.” We constantly check in on them and see how
they’re managing with caregiving, and give appropriate resources.
Dr. Yuichi Edwin Yanami: Caregivers often don’t know what’s
happening within other families, right? So, they may only see their situation
and decide how good or bad the situation is. That’s what we mean by providing validation.
We say, “Actually you’re doing really well,” or “This is a very tough case.”
Like an outside opinion.
it’s too much, it’s okay to ask for help. Maybe getting siblings to help you or
you may need to have a caregiver. Depending on the situation, we also tell the
family it’s okay to place your loved one in a facility as well.
Kanako: Other ways we support include providing resources for caregiver support groups if they are isolated, and just need to connect with others to share their feelings; explaining long-term care facility options, like board and care versus assisted living; providing information on Medi-Cal, if they are interested; providing resources and options on private caregivers or in-home caregivers; giving legal assistance if they are interested in making wills, trusts, or advanced directives, or updating any of those documents; and providing resources on meals on wheels and/or transportation.
Have there been cases where families
need the help but are limited financially? At that point, what assistance do
Dr. Yanami: There’s a lot of cases like that.
Joshua Northcutt: It’s rare that they can financially
Dr. Yanami: We talk to them about reaching out to
other family members, and tell them it’s a tough time and you can’t bear it by
yourself to care for your loved one.
Kanako: In the past, I have referred one family
to a financial planner in order to qualify for Medi-Cal*. And now he lives in a
skilled nursing facility.
Throughout the two and a half years
since the Iyashi Care program started, have you seen any major patterns in whom
you have provided support for?
Kanako: The biggest thing we see is family
caregivers struggling and needing help with caregiving for patients with
dementia. I would say the majority of our Iyashi Care patients have a dementia
Dr. Yanami: Dementia patients have memory issues, so
they tend to have decreased judgment. They are not aware of their risks, and so
they are at a higher risk of falling.
Joshua: Medications play a factor too,
depending on what time of the day it is. They could also forget that they need
a walker or cane, and so they are prone to falls.
Do you notice community members being in denial about their own status as a dementia patient?
Are people still thinking
that losing their memory is a normal part of aging?
It’s not that they think losing memory is normal part of aging, but they don’t
realize they’re losing the memory. They’re past that point of identifying that
they are losing their memory.
Who tends to make the
initial call for enrollment into Iyashi Care?
What common struggles, if
any, do family members who care for those with dementia express?
Yanami: I notice that the patient’s family
members are overwhelmed with caregiving in various ways. There are families
struggling to manage a very confused and agitated patient. There are other
families who may be struggling to hire a caregiver, because the patient says,
“I’m fine, I don’t need your help.”
Joshua: Yes, denial is huge, especially among
Dr. Yanami: We get calls where people say, “My parents/cousin/sibling
needs your help.” When I get around to speaking with the individual they
sometimes don’t want any help… Those are difficult situations.
What do you do in those types of
Dr. Yanami: We try to ease [the patient] into it.
We encourage the family to start assistance with once a week, and tell them
it’s not a caregiver. The phrase I like to use is, “Now’s the time to live like
a king or a queen, and have people help you.” (Chuckles) We try various things and hope something will work.
Joshua: If the patient is mildly confused, we sometimes
say things like, “This isn’t so much for you. We know you want to be
independent, and keep your privacy, but this is so that your wife can do her
thing, like go shopping.”
Dr. Yanami: We also say, “I don’t want you to fall, because falling can lead to further decline, so you’ll be independent and comfortable as long as it doesn’t happen. That’s why we need someone to look out for you.” The family is aware but we say it to both the patient and family, so that the family has the power to say, “remember what the doctor said?” and the patient may or may not remember, but at least the family is not lying.
Are there times when you can’t convince
the patient to do something?
Joshua: We don’t convince ̶ we can only strongly encourage.
Kanako: We really can’t convince the patients
anymore to do or not do things. At a certain point for dementia patients, if we
argue, it’s not going to go anywhere. I think at that point what we can try to
do is to educate the family members, for example, that a patient not taking
showers won’t kill them. Family members may benefit from learning how to
balance what is best for the patient, while also maximizing the care they
provide for their loved one.
encourage family members to try to listen to the patient’s concerns and really
educate them that that’s part of the symptom, and we have to work around it;
because what you think is normal is no longer normal for them.
Is it more difficult if the patient gets
more violent as a result of advanced dementia?
Dr. Yanami: If the patient does become violent due
to dementia, it may be actually easier to accept that you need help.
Kanako: When one of the family members are
managing, they usually don’t call us. But when it’s getting to the point where
family members are noticing how the reminder doesn’t work anymore, or they
wander out on their own, then they will call us.
Dr. Yanami: It’s usually early to moderate dementia,
when memory is becoming a problem, when people decide to call. It’s that point
when the patient still wants to be independent or thinks he/she is independent
when they are not anymore. But whatever the situation is, you can still call us
and share the stress rather than not talking about it.
*If you are looking for options to pay for long-term care facilities, such as a skilled nursing facility, consider consulting a financial planner to discuss options such as Medi-Cal.
Read part one of this series here
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