Caregiver Preparedness: Considerations for Novice and Experienced Caregivers

Transcript

• 00:25Hello there, My name is Emily Morose.
• 00:27I'm a postdoctoral Fellow in the
• 00:29section of Geriatrics here at the
• 00:31Yale School of Medicine by training.
• 00:33I'm a developmental psychologist
• 00:34as well as a healthcare
• 00:36quality improvement researcher,
• 00:38and I'm excited to share my
• 00:39work with you all today.
• 00:42So I want to start by reminding the
• 00:44audience you probably know, just broadly,
• 00:47that care for individuals with chronic
• 00:49illnesses or functional needs relies
• 00:51currently on a multimillion person
• 00:53workforce of family caregivers.
• 00:55These caregivers contribute a wide range
• 00:58of support to their care recipient,
• 01:00including helping with activities
• 01:02of daily living, health planning,
• 01:04transportation, legal and medical system,
• 01:06navigation, emotional regulation,
• 01:09and companionship.
• 01:11Considering that wide range of support tasks,
• 01:13preparedness for caregivers is a
• 01:16major predictor of the functioning,
• 01:18psychological health,
• 01:19and quality of life of both the
• 01:22caregiver and their care recipient.
• 01:24However, few opportunities exist currently
• 01:27to bolster caregiver preparedness,
• 01:29and the interventions that do exist
• 01:31focus on providing caregivers with
• 01:33specific skills to address each of the
• 01:35types of support tasks that they may be
• 01:37engaging in with their care recipient.
• 01:40Because we're seeing a steady increase
• 01:42in our population of family caregivers,
• 01:44particularly those caregivers of
• 01:46close others living with Alzheimer's
• 01:48disease and related dementias,
• 01:50preparing caregivers for care roles
• 01:52has become a public health priority.
• 01:55So currently,
• 01:55one in five Americans provide
• 01:57care to a close other,
• 01:59including over 11,000,000 caregivers
• 02:01of persons living with dementia
• 02:04who provide over 16 billion
• 02:06hours of unpaid care annually.
• 02:08And this proportion is expected
• 02:10to increase over time as the
• 02:13prevalence of dementia increases.
• 02:15And caregiving for a person living
• 02:17with dementia is typically a
• 02:19multiyear experience where care
• 02:21partner symptoms worse worsen and
• 02:23their needs increase gradually.
• 02:25At the same time,
• 02:27public policies worldwide encourage
• 02:28family caregivers to do whatever they
• 02:30can to keep that care partner at home,
• 02:32supporting their daily needs while
• 02:35allowing them to age in place.
• 02:37This long care trajectory requires
• 02:40those caregivers to gain or or or.
• 02:42It can actually allow those caregivers
• 02:45to gain a variety of skills and
• 02:47pragmatic insights about caregiving.
• 02:49But it also increases the chances
• 02:52that those caregivers are going to
• 02:54take on a negative psychological
• 02:56consequences of those caregiving
• 02:58experiences that they've had.
• 03:00Some of those consequences include guilt,
• 03:02burnout, roll, strain, depression, etcetera.
• 03:07And not only are we seeing an increased
• 03:09reliance on caregivers in general,
• 03:11we're specifically seeing an
• 03:12increased reliance on people to
• 03:14be caregivers for more than one
• 03:17loved one across their adulthood.
• 03:19So these are who could be considered in our
• 03:22population to be experienced caregivers.
• 03:25There may be individuals listening in
• 03:26today who are experienced caregivers,
• 03:28so people who have cared for more than
• 03:31one person who's who has who has lived
• 03:33with a chronic illness and needed support.
• 03:36And as our population ages,
• 03:37it is inevitable that more individuals
• 03:39will need to act as caregivers more
• 03:42than once while they are healthy,
• 03:44healthy,
• 03:44and capable to act as caregivers.
• 03:46We don't have stellar data in
• 03:48the US showing these trends,
• 03:50but we do have evidence from Canada that
• 03:52shows that about 1/4 of older adult
• 03:55caregivers will report caring for more than
• 03:57one care partner across their adulthood.
• 04:00So,
• 04:00for example,
• 04:01these Canadian demographers who did the study
• 04:03and mapped caregiving trajectories
• 04:05found that there were a few different
• 04:07subgroups of who I would call experienced
• 04:10caregivers who had cared for more than
• 04:12one loved one in their adulthood.
• 04:14So, for example, one trajectory includes this
• 04:17idea of an intensive parent care trajectory,
• 04:20which involves caring for multiple
• 04:23caregiving episodes across adulthood,
• 04:25typically about two caregiving episodes,
• 04:27often starting with care for a parent and
• 04:31ultimately comprising over 10 years of
• 04:33caregiving responsibility in adulthood.
• 04:35Other caregiving trajectories,
• 04:36like the this idea of serial caregivers,
• 04:39involve even more caregiving roles
• 04:41beginning even earlier in adulthood.
• 04:43So this for example involves an average
• 04:45of three caregiving episodes and usually
• 04:48comprises over 30 years of caregiving
• 04:51support provided to loved ones.
• 04:54So despite an increased dependence
• 04:56on family caregivers,
• 04:58caregivers of persons living with
• 05:00dementia report low preparedness to
• 05:02engage in caregiving roles and really
• 05:04limited resources to fully prepare them
• 05:06for what will come in those care roles.
• 05:09And these limitations have measurable
• 05:12impacts on those care outcomes.
• 05:14Caregivers who report low preparedness
• 05:16also report worth worse mental health,
• 05:19worst decision making efficacy,
• 05:20higher role strain and higher likelihood
• 05:23of institutionalizing their care
• 05:24partner earlier on in the course of
• 05:27care as well as local lower quality
• 05:29of life for those care partners.
• 05:31And that's why recent recently national
• 05:34leadership groups like the IMPACT
• 05:36Collaboratory and the Alzheimer's
• 05:38Association have developed research
• 05:40agendas that include designing robust
• 05:43strategies to improve caregiver preparedness.
• 05:46And one way to prepare caregivers is
• 05:48to consider what previous experiences
• 05:49with caregiving that they have had
• 05:51and how that may impact their
• 05:53preparedness for current care roles.
• 05:57So this idea that experiences
• 05:59in former care roles can impact
• 06:01navigation or stressors and current
• 06:04care roles isn't a new idea.
• 06:06Back in the 1980s and 1990s,
• 06:08researchers described this What's
• 06:10on the screen is the stress process
• 06:13model of family caregiving,
• 06:14and they included caregiving history
• 06:17as a key background characteristic
• 06:19that predicts the presence and
• 06:21degree of primary and secondary
• 06:23stressors in current care roles and
• 06:26ultimately impacts outcomes for
• 06:28that caregiver and care recipient.
• 06:30Yet still today,
• 06:31even years later, decades later,
• 06:33we know very little about the compounding
• 06:36effects of multiple caregiving roles
• 06:38across adulthood in terms of outcomes for
• 06:41the caregiver and their care recipient.
• 06:43So in the present,
• 06:45many individuals,
• 06:45and it seems like particularly those
• 06:47who have never been caregivers,
• 06:49might assume that if you've
• 06:50been a caregiver before,
• 06:51that can offer you a cumulative advantage,
• 06:54meaning that it provides you with
• 06:55a leg up in your current care role.
• 06:57This is an optimistic perspective,
• 06:59and ideally it's a perspective
• 07:01that's at least partially true.
• 07:02It would be really great if caregiving
• 07:05experiences can fortify us or teach us
• 07:07or prepare us to be caregivers again.
• 07:09This might minimize stressors and
• 07:12bolster self perception because and
• 07:14ultimately means that the existing
• 07:16workforce of caregivers are becoming
• 07:18better equipped for these roles.
• 07:20However, as we'll discuss,
• 07:21I believe that this assumption
• 07:23neglects the decades of research we
• 07:26have showing that there are persisting
• 07:28negative ramifications of caregiving roles,
• 07:31which in some cases may lead to
• 07:33not a cumulative advantage but a
• 07:35cumulative disadvantage for those
• 07:37experienced caregivers.
• 07:38So in pursuing this line of inquiry
• 07:40about experienced caregivers,
• 07:42several big questions have come up
• 07:44for me and including what skills or
• 07:47insights or psychological resources
• 07:49transfer from prior care roles
• 07:51to inform or improve current or
• 07:54future care roles.
• 07:55When and how those things happen?
• 07:57What insights are psychological
• 07:59consequences persist from prior
• 08:01care roles in ways that might
• 08:03undermine the benefits or harm
• 08:05functioning in current care roles?
• 08:07And again, why and how?
• 08:09And finally,
• 08:10what support do those experienced
• 08:12caregivers need to perform and
• 08:14thrive in their current care roles
• 08:16and even in future care roles?
• 08:18So I want to ground these
• 08:20questions in an example.
• 08:21We can think of someone who could
• 08:23be described as a novice caregiver.
• 08:25He's begun providing support for his mom,
• 08:28but he hasn't been a caregiver outside
• 08:31of childcare before in his life.
• 08:33So he has really limited skills with
• 08:36navigating the healthcare system,
• 08:37having those difficult conversations
• 08:39about prognosis or goals of
• 08:41care access and care resources,
• 08:43or predicting his mom's needs.
• 08:44In other words,
• 08:45he's exhibiting low preparedness because
• 08:47he doesn't have those caregiving skills.
• 08:50For him.
• 08:51A skill based intervention might be helpful,
• 08:54but the second person is caring
• 08:56for her husband and has also
• 08:58cared for her dad in the past.
• 09:00Although care experiences
• 09:01are different in many ways,
• 09:03she has picked up on skills in the past
• 09:05that are applicable to her caregiving now.
• 09:08She's also formed personal narratives
• 09:10about what caregiving looks like,
• 09:13how it should be done,
• 09:14and how good she is at doing it.
• 09:16So depending on the skills she's picked
• 09:18up and the narratives she's formed,
• 09:20she may feel fully prepared for
• 09:21it to care for her husband,
• 09:23or she may not. But if not,
• 09:25a skill based intervention might
• 09:27offer some additional support.
• 09:29But this caregiver might need other
• 09:32types of preparedness support that are
• 09:34not currently available to caregivers.
• 09:39So specifically in situations where
• 09:41experienced caregivers have really
• 09:43negative or complex narratives about
• 09:45their prior caregiving experiences,
• 09:47they might need specific support
• 09:49that goes beyond offering skill
• 09:51based training to instead address
• 09:53their worry about their ability to
• 09:55perform in the caregiving role.
• 09:59So, you know, considering all of
• 10:01this context and all these examples
• 10:03of of of how novice and experienced
• 10:05caregivers might might differ in the
• 10:08support resources that they need,
• 10:09a research team from the Yale School of
• 10:12Medicine and Public Health came together
• 10:14to explore this qualitatively in a
• 10:17sample of midlife former caregivers.
• 10:21And again, these were former caregivers
• 10:22of parents who had recently died following
• 10:25advanced Alzheimer's disease or dementia.
• 10:27And what our team had found is
• 10:29that former caregivers describe
• 10:31preparedness for future caregiving
• 10:33as involving several domains that are
• 10:36influenced by their prior care roles.
• 10:39So specifically looking at
• 10:40the light blue boxes,
• 10:42all former caregivers described that prior
• 10:44care roles taught them specific skills or
• 10:47pragmatic insights that could contribute
• 10:49to their preparedness for future care roles.
• 10:52And so again,
• 10:53we kind of categorize them into
• 10:54these three boxes of skills.
• 10:56First in terms of self conduct,
• 10:58so these are things like self-care,
• 11:00emotion,
• 11:01regulation or resilience and other
• 11:03psychological resources that some
• 11:05caregivers had developed and felt that
• 11:07they could tap into in future care roles.
• 11:10Next, we were we developed a category
• 11:13of skills in care navigation.
• 11:15So this involves coordinating Dr.
• 11:17visits, overseeing finances,
• 11:20hiring and managing formal care support,
• 11:23etcetera.
• 11:23And finally,
• 11:24we found a domain in terms of skills
• 11:26relating to relating with your
• 11:28care partner that care recipient.
• 11:30I'm.
• 11:30So this involves interpersonal
• 11:32skills for maintaining a strong
• 11:34positive relationship even when a
• 11:35care partner's personality changes
• 11:37or they become more dependent,
• 11:39which is really common in this Alzheimer's
• 11:42disease and dementia disease trajectory.
• 11:45So zooming out from those light blue
• 11:47boxes when caregivers described,
• 11:48while caregivers described those
• 11:50really critical skills that they had
• 11:52learned in those prior care roles,
• 11:53they also described the value of
• 11:56having developed confidence or
• 11:57belief in their personal ability
• 11:59to handle their future care roles.
• 12:02And I'm going to describe what confidence
• 12:03looks like more in just a minute.
• 12:05But finally,
• 12:06we know from previous research that
• 12:08one's ability to address activities
• 12:09of daily living like bathing,
• 12:11feeding, transporting,
• 12:12and dressing a care partner is also
• 12:14important for success and care roles.
• 12:16Caregivers didn't describe having gained
• 12:19any specific ability to perform these
• 12:22activities through prior care roles.
• 12:24It kind of appears,
• 12:25you know,
• 12:25in terms of our qualitative study
• 12:27that caregivers either feel like
• 12:29they had or did not have the
• 12:30physical strength or psychological
• 12:32wherewithal or other resources
• 12:33to handle those activities.
• 12:35Prior cure roles don't really add
• 12:37or subtract from those abilities.
• 12:43So coming back to caregiving confidence,
• 12:45this is what I considered to be the
• 12:47crucial finding from this work broadly,
• 12:49although all caregivers described again
• 12:51having learned those skills from those light
• 12:54blue block boxes on the previous slide,
• 12:57their confidence varied really
• 12:58widely and we categorize confidence
• 13:01in these four different ways.
• 13:03So first we found a category of sustained
• 13:07confidence where caregivers described
• 13:09that because of previous care rules
• 13:11that they had had even earlier in
• 13:13life or because of caring professions,
• 13:16often health professions,
• 13:17they already had the sustained
• 13:19confidence to be able to be a
• 13:20caregiver as many times as it took.
• 13:22They sort of tapped back into this
• 13:25profession or sort of trade as a caregiver.
• 13:27And so this participant shared with
• 13:29us that I went into patient mode.
• 13:31I think, well,
• 13:32caring for what caring for my dad
• 13:34showed me was that even though I don't
• 13:36practice at the bedside anymore,
• 13:37there's still something that is at
• 13:39the core of who I am and what I do.
• 13:42Caregivers in some cases also
• 13:44described boosted confidence.
• 13:45And this was the category that encapsulated
• 13:48those people who felt like yes,
• 13:49because of my previous caregiving
• 13:51experience for my parent who who had
• 13:54recently died after advanced dementia,
• 13:56I now feel more prepared.
• 13:57I have this boosted confidence.
• 13:58I feel more able to be a caregiver again,
• 14:01and I'm actually looking forward
• 14:03to the opportunity.
• 14:04And so this caregiver said if I
• 14:05had to take care of somebody else,
• 14:07I would absolutely do it.
• 14:09I don't want somebody else to do it.
• 14:10I want to do it.
• 14:11I want to make the decisions and it
• 14:13was really interesting to hear this
• 14:15from a participant who had described
• 14:16previously never thinking that he would
• 14:18be a caregiver or a good caregiver.
• 14:21Next,
• 14:22we saw these individuals who
• 14:24describe restricted confidence.
• 14:25These were people who said I
• 14:27could be a caregiver.
• 14:28Again,
• 14:28I think that I have the ability,
• 14:29but I have some qualifiers or
• 14:31caveats about what I would want it
• 14:33to look the next like the next time.
• 14:35For example,
• 14:36I might not be able to do it if it
• 14:38was a different type of family member,
• 14:40say a sibling or a spouse,
• 14:42even though I did it for my parents.
• 14:44Or I was able to do it for my mom,
• 14:46but I'm not really sure about
• 14:47doing it for my dad.
• 14:48And so these were people who had those
• 14:51qualifiers or were sort of reluctant
• 14:53to to envision really stepping into
• 14:56a caregiving role in the future.
• 14:58So for example,
• 14:59this participant said,
• 15:00I definitely did learn some things.
• 15:02I also got very depressed.
• 15:04If I had to do it, would I do it?
• 15:06Probably I would,
• 15:07because that's the kind of person I am.
• 15:09But God, I don't really,
• 15:10I really don't want to have to go
• 15:11through that again emotionally.
• 15:12So she certainly says, oh,
• 15:13I think I could do it,
• 15:14but I do have these reservations
• 15:16because it was very
• 15:18challenging. And importantly,
• 15:19we found this fourth group of caregivers
• 15:21who described impeded confidence.
• 15:23These were individuals who were
• 15:25highly resistant to the idea of being
• 15:27a caregiver again in the future,
• 15:29even if they could picture somebody
• 15:30who they would likely have to
• 15:32care for again in the future.
• 15:34And so this participant had told us it hurts.
• 15:36When you find out you're naive,
• 15:38I feel like it's so damaging that you
• 15:40can't do it properly for somebody else.
• 15:43And so this person is really
• 15:45articulating this idea of, you know,
• 15:47I have this perception of myself as someone
• 15:49who was too naive in the caregiving role.
• 15:51And I'm really so damaged by that experience
• 15:53that I don't believe that I could be
• 15:54a good caregiver again in the future.
• 15:59Importantly, for caregivers who had
• 16:02restricted or impeded confidence,
• 16:04even having learned important skills
• 16:06from prior care roles appears to be
• 16:08insufficient for their perceived
• 16:10preparedness for future care roles,
• 16:12as described by this caregiver who said,
• 16:14I think I have more tools in my arsenal
• 16:16to try to do things if I had to,
• 16:18but I don't think I have any
• 16:19level of certainty that I would be
• 16:21able to deal with it any better.
• 16:23And also, skills and confidence
• 16:25for future care experiences were
• 16:27shaped by those personal narratives
• 16:29that caregivers had developed
• 16:31about their prior care experiences.
• 16:33So specifically,
• 16:34multiple caregivers described similar
• 16:36events from their prior care roles
• 16:39but narrated them in ways that
• 16:41emphasized or deemphasized their own
• 16:43competence or aptitude or insights,
• 16:45which influenced their their sense
• 16:48of preparedness for.
• 16:49So for example,
• 16:502 caregivers both described learning
• 16:52that they were too committed to
• 16:55caregiving without support from others
• 16:56they weren't willing to take on help,
• 16:58which is a typical caregiving
• 17:00issue caregiver issue.
• 17:01They want to try to do it all by themselves.
• 17:04And these caregivers described that these
• 17:07insights affected them in different ways.
• 17:09So one participant said, here's my line,
• 17:12as long as there's somebody there
• 17:14who can help you,
• 17:15I have the knowledge and I know
• 17:16what limitations I have,
• 17:18so I'm better prepared.
• 17:19So this person basically describes
• 17:20having learned from her mistakes,
• 17:21not not having taken on that,
• 17:24that support earlier on in
• 17:25her prior care role.
• 17:26She now feels more prepared
• 17:28because she's learned that.
• 17:29But in contrast, again,
• 17:31thinking about a different way that
• 17:32the same narrative can be told,
• 17:34another participant said that
• 17:35was a mistake that I made,
• 17:37not figuring out how to get more help.
• 17:39I regret that I didn't.
• 17:41You want to be a caregiver?
• 17:42No, that's not something that I'm doing.
• 17:44I can't emotionally handle it.
• 17:46So this is a person who also
• 17:47learned that they had made a mistake
• 17:49and not taking on more help.
• 17:51But in this case,
• 17:52this is a caregiver who said,
• 17:54I've learned that I'm not able to do that.
• 17:56I've learned that it's not something that
• 17:57I can emotionally handle in the future,
• 18:01so I want to wrap up with
• 18:03a few takeaways for you.
• 18:04Also, this study really provided
• 18:06very critical information to
• 18:08inform next steps in research
• 18:09but also in clinical practice.
• 18:12So first take away point is that
• 18:14preparedness for caregivers in a dementia
• 18:16care context often involves not just
• 18:18gaining skills or pragmatic insights,
• 18:21but also gaining and maintaining
• 18:23confidence in one's care ability.
• 18:25Multiple caregivers described that
• 18:27there was no clinical screening
• 18:29tool or practices in the clinical
• 18:32setting to address their preparedness
• 18:34early in their care role,
• 18:36and they consistently called for tools
• 18:38to prompt discussion with providers
• 18:40about their preparedness earlier
• 18:42in their caregiving trajectories.
• 18:44In addition,
• 18:45expecting that prior care roles
• 18:47and caregivers necessarily boost
• 18:49their preparedness just by nature
• 18:50of exposing them to the care
• 18:52situations that they could engage
• 18:53in is a flawed expectation and might
• 18:56be harmful for multiple reasons.
• 18:58So specifically,
• 18:59this expectation can lead to
• 19:00a focus on preparing not only
• 19:03novice caregivers or sorry,
• 19:04a focus on preparing only novice caregivers,
• 19:06leaving those experienced caregivers
• 19:08with few resources that are tailored
• 19:10to them because we just expect that
• 19:13they already know what they're doing.
• 19:15This expectation can also harm
• 19:16caregivers who feel pressure to
• 19:18be professionals or pros in their
• 19:20new care roles because they've
• 19:21been caregivers before,
• 19:23but who really don't feel adequately
• 19:24equipped and and don't know how to
• 19:26articulate that dissonance between
• 19:27what they feel like they should be
• 19:29and what they feel like they are.
• 19:31And finally,
• 19:32these findings revealed a subset
• 19:34of former caregivers who really did
• 19:37maintain personal narratives that
• 19:38perpetuated a sense of incompetency,
• 19:41diminishing their confidence and
• 19:43threatening their preparedness
• 19:44for future care roles.
• 19:46This is concerning given that
• 19:48participants were in midlife and the
• 19:50majority of the participants in this
• 19:52study anticipated being caregivers to
• 19:54family or close others in the future.
• 19:56Currently,
• 19:57there are no interventions that exist
• 19:59to support experienced caregivers and
• 20:01support their preparedness on multiple
• 20:03levels for their new care roles.
• 20:05And so we need to do more and better.
• 20:07But in the meantime,
• 20:08as we conduct that additional research
• 20:10and think about ways to intervene
• 20:12for these experienced caregivers,
• 20:13there are some takeaways specific
• 20:15to the clinical setting.
• 20:18The first take away that I just want
• 20:20to briefly emphasize is that it's
• 20:22important to empower caregivers by
• 20:24emphasizing their competency and
• 20:25that this might have a ripple effect
• 20:28where you can boost caregivers
• 20:29confidence in one care role and it
• 20:31could actually translate to positive
• 20:33outcomes across multiple caregiving roles.
• 20:35If a caregiver feels competent
• 20:37or in one care role,
• 20:38they might also take that with them
• 20:40in the form of a narrative they've
• 20:42they've developed about themselves as
• 20:44a caregiver into subsequent care roles.
• 20:46So there really is that important
• 20:48ripple effect to consider when
• 20:49we work with caregivers.
• 20:52Also,
• 20:52when considering a patient's
• 20:54care support network,
• 20:54it's critical to understand that their
• 20:57caregivers do have often caregiving
• 20:58histories that really shape the way
• 21:00that they're entering this new care role.
• 21:02And so not to think about caregivers
• 21:04coming into the clinic as a blank
• 21:06slate or sort of open to learn,
• 21:08but that they might also bring those
• 21:10narratives and those histories with them
• 21:12that can shape the way that they engage
• 21:14with you and and and with their patient.
• 21:17And finally, you know,
• 21:18one of the important takeaways from this
• 21:20is that we could simply ask caregivers
• 21:22during clinical encounters really
• 21:23simple questions about whether they've
• 21:25been a caregiver before and and just
• 21:27briefly to describe what was that like.
• 21:30And this might be able to reveal
• 21:32important information about
• 21:33the caregivers experiences,
• 21:34their fears and their support needs,
• 21:36allowing clinicians to more easily
• 21:39connect caregivers to resources or
• 21:40even just to consider how that patient
• 21:43might need additional support at home.
• 21:47So I just want to end off with providing
• 21:49some additional opportunities to
• 21:51learn about this work, this research,
• 21:53The qualitative study that I
• 21:55described during this presentation
• 21:56was published in the Journal of
• 21:58the American Geriatric Society.
• 22:00And also I recently went on as a
• 22:04guest for a podcast called Doing
• 22:05It Best with Elder Care Success.
• 22:08That podcast episode was about the
• 22:10idea of experienced caregivers and
• 22:12how we can better support them.
• 22:13So if you were interested in
• 22:15listening to that talk with the
• 22:16wonderful host Nancy May,
• 22:17you can go ahead and scan that QR code
• 22:20or just look up that podcast on any
• 22:22platform that you listen to podcasts.
• 22:25Thank you so much for your
• 22:26attention today to this talk.