WEBVTT Kind: captions Language: en 00:00:01.840 --> 00:00:08.080 Okay hi and good afternoon at least on eastern  time zone everyone. It's my pleasure to be here   00:00:08.080 --> 00:00:14.480 today and share some of the early findings  from my work on caregiving during COVID-19   00:00:14.480 --> 00:00:19.600 specifically caregiving for an individual  living with dementia during the pandemic. 00:00:22.400 --> 00:00:26.000 And I would first like to start by  acknowledging my funding for this work,   00:00:26.000 --> 00:00:29.760 which comes from my career development  award from the National Institute on Aging   00:00:29.760 --> 00:00:33.440 and a supplement to that  award specific to COVID-19.   00:00:33.440 --> 00:00:39.040 I have a fabulous research team and also mentor  collaborators who have supported this work. 00:00:41.280 --> 00:00:45.600 So first to start out about the COVID  context which I'm sure is familiar   00:00:45.600 --> 00:00:53.600 to everyone but specific to caregiving and aging.  So we know from existing work on natural disasters   00:00:54.160 --> 00:00:59.600 that older adults especially those with  pre-existing medical conditions are at increased   00:00:59.600 --> 00:01:07.360 risk for negative effects from such global crises.  And specifics of COVID-19, we've seen that older   00:01:07.360 --> 00:01:13.600 age is related to critical health outcomes  as well as mortality specific to COVID-19,   00:01:13.600 --> 00:01:19.280 which really puts older adults and individuals  with dementia specifically and their care partners   00:01:19.280 --> 00:01:26.080 at an increased risk for negative outcomes to  COVID-19. Also throughout the pandemic, we've seen   00:01:26.080 --> 00:01:33.760 how healthcare systems have shifted to really have  a singular focus on COVID leaving fewer resources   00:01:33.760 --> 00:01:39.440 for other medical conditions which may be very  common among older adults. And so there's been a   00:01:39.440 --> 00:01:45.840 little bit more of a struggle to potentially get  ordinary or routine care. So, for a variety of   00:01:45.840 --> 00:01:53.600 reasons the pandemic may be acting as a barrier to  caregiving due to this ongoing fear of infection   00:01:53.600 --> 00:01:58.240 for both the caregiver and the individual  dementia for whom they're providing care. 00:02:00.320 --> 00:02:06.960 Also we've seen changing policies during  the pandemic that have impacted older adults   00:02:06.960 --> 00:02:12.000 individuals with dementia and their caregivers. So  caregivers may be asking themselves the question   00:02:12.800 --> 00:02:19.760 should I abide by physical distancing regulations  or do I continue to provide essential care   00:02:19.760 --> 00:02:23.920 to my friend or relative? We've  seen restrictions on typical daily   00:02:23.920 --> 00:02:29.120 activities, reduced physical activity as an  association of physical distancing orders,   00:02:29.680 --> 00:02:33.760 and older adults have lost many  outlets such as respite programs   00:02:34.320 --> 00:02:40.720 or churches or even restaurants. We don't often  think about that, but just the social interaction   00:02:40.720 --> 00:02:46.000 and the chance to take a break from care that  going out to eat can provide is enormous for many   00:02:46.000 --> 00:02:51.760 individuals with dementia and their caregivers.  And caregivers have had a greater difficulty   00:02:51.760 --> 00:02:57.840 in accessing services and healthcare and may  have had to shift to relying on services and   00:02:57.840 --> 00:03:02.800 new modalities such as telehealth. All these  dramatically changing the caregiving landscape. 00:03:03.520 --> 00:03:09.200 So my research has focused on primary family  caregivers for an individual living with dementia   00:03:09.200 --> 00:03:12.400 during the pandemic. We've  done mixed methods interviews,   00:03:12.400 --> 00:03:16.240 and today I'll be sharing some findings  some emerging findings on a preliminary   00:03:16.800 --> 00:03:21.200 sample of our participants. We have just  finished wrapping up recruitment for this study.   00:03:21.760 --> 00:03:26.240 And the individuals living with dementia were  community dwelling so not in a nursing home   00:03:26.240 --> 00:03:32.160 or assisted living care facility and they  were not at the terminal stage of disease. 00:03:32.160 --> 00:03:36.960 Here's just a little bit about our sample. On  average our caregivers were in their mid 60s.   00:03:36.960 --> 00:03:42.400 The majority were married. We, being at the  University of Michigan in a college town,   00:03:42.400 --> 00:03:47.200 we have a pretty highly educated sample and  you can see the diversity by race there. 00:03:48.800 --> 00:03:55.280 So starting out, how did the pandemic impact  caregivers lives according to them? So on the   00:03:55.280 --> 00:04:01.200 left chart you can see we asked caregivers to talk  about whether the pandemic impacted their ability   00:04:01.200 --> 00:04:05.760 to participate in activities that gave them  that break, that gave them respite from care.   00:04:05.760 --> 00:04:11.920 And you can see that the majority said that they  did experience impact on those activities with   00:04:11.920 --> 00:04:17.520 about half the sample saying quite a bit or  extreme impact. Then on the right hand side,   00:04:17.520 --> 00:04:23.440 at first this chart may seem encouraging that  you know over half of the sample said they had no   00:04:23.440 --> 00:04:29.120 financial difficulties that made caregiving more  difficult. But on the flip side, you can see about   00:04:29.120 --> 00:04:35.360 how the sample did report financial difficulties  making their caregiving lives more challenging. 00:04:36.800 --> 00:04:42.240 We also asked about the impact on their  relationship with the individual with dementia,   00:04:42.240 --> 00:04:48.080 and you can see again over half  said that their relationship   00:04:48.080 --> 00:04:54.640 stress increased both at a moderate or severe  level during the pandemic. And then we ask   00:04:54.640 --> 00:04:58.800 about their ability to provide care kind  of relating to caregiving stress. Was it   00:04:58.800 --> 00:05:03.440 easier or more difficult to provide care  during a pandemic? And you can see that   00:05:04.160 --> 00:05:09.840 about half of the sample said it was somewhat  to extremely difficult to provide this care. 00:05:11.360 --> 00:05:16.080 We also looked at a variety of challenges  and also supports that caregivers could   00:05:16.080 --> 00:05:20.400 report experiencing during the pandemic and  these were actually items that we created   00:05:20.400 --> 00:05:27.200 for the national poll on healthy aging which is  sponsored by the AARP and the Michigan Medicine.   00:05:27.200 --> 00:05:33.040 And this left-hand column is that national poll  sample and we've published those findings you   00:05:33.040 --> 00:05:38.320 can see in the upper left hand side. So the  national pole sample specifically looked at   00:05:38.320 --> 00:05:44.880 caregivers for any adult age 18 and older with  any chronic illness or disability, whereas our   00:05:44.880 --> 00:05:50.240 right hand column is our dementia caregiving  sample. And you can see that universally, the   00:05:50.240 --> 00:05:56.320 dementia caregivers reported greater experiences  of these caregiving challenges such as difficulty   00:05:56.320 --> 00:06:02.640 getting medical care for one's care recipient  or providing less care to reduce risk of spread   00:06:02.640 --> 00:06:08.800 or you can see over half of the samples said they  received less support from family and friends in   00:06:08.800 --> 00:06:14.880 assisting with care during the pandemic. I want to  hone in a little bit on these top two challenges   00:06:14.880 --> 00:06:19.840 of getting needed in-home and out-of-home  services and in getting needed medical care. 00:06:20.560 --> 00:06:26.560 So specifically we asked caregivers what  sorts of services they had greater difficulty   00:06:26.560 --> 00:06:31.840 in accessing? And again similarly there you can  see that about half of the sample said they had   00:06:31.840 --> 00:06:37.200 greater difficulty getting respite from family  or friends, and you can see nearly half of our   00:06:37.200 --> 00:06:42.240 samples said they had difficulty getting regular  medical care such as physician appointments,   00:06:42.240 --> 00:06:48.320 with day activity programs also  almost nearing half of our sample. 00:06:48.320 --> 00:06:52.960 Because this was a mixed method study we also  did in-depth interviews with the caregivers, and   00:06:52.960 --> 00:06:57.600 these issues of medical care and community-based  services came up again and again. So I thought   00:06:57.600 --> 00:07:02.960 I would quickly share with you some striking  quotes that we've seen from these interviews.   00:07:02.960 --> 00:07:08.080 So first here the difficulty of just getting a  medical appointment during the pandemic. You can   00:07:08.080 --> 00:07:12.400 see the caregiver said they had to reschedule  or cancel an appointment because the individual   00:07:12.400 --> 00:07:16.800 with dementia didn't want to go, and this can be  a common challenge with dementia. And then the   00:07:16.800 --> 00:07:22.320 caregiver said it was very difficult to then get  another appointment because the wait times were so   00:07:22.320 --> 00:07:27.840 long and the caregiver really had to advocate for  that appointment. A complimentary issue is that   00:07:27.840 --> 00:07:34.240 often caregivers were not allowed in appointments  during the pandemic with only the patient being   00:07:34.240 --> 00:07:40.560 allowed in, but when it comes to dementia this  is very difficult because they may not be able to   00:07:40.560 --> 00:07:46.480 relay an adequate history or adequately describe  the symptoms or what they're experiencing.   00:07:46.480 --> 00:07:52.240 And so you can see this caregiver saying they  weren't allowed back at first which was a problem,   00:07:53.200 --> 00:07:58.800 and they they felt embarrassed somewhat to try  and have to explain to the care provider why   00:07:58.800 --> 00:08:05.680 they needed to be back there because they didn't  want the individual with dementia to feel ashamed. 00:08:07.440 --> 00:08:12.160 They also talked about difficulty getting  respite services and the community and to   00:08:12.160 --> 00:08:17.440 their home having long wait times or people being  scheduled to come who would just never show up.   00:08:18.160 --> 00:08:22.320 And then of course telehealth which has become a  new thing for many of us throughout the pandemic.   00:08:22.880 --> 00:08:27.600 Caregivers had really mixed experiences  with that, some citing great benefit of   00:08:27.600 --> 00:08:31.680 not having to leave the home for appointments  but you can see with this caregiver here saying   00:08:31.680 --> 00:08:35.520 you know some were helpful and some were  a total waste of time that they felt   00:08:35.520 --> 00:08:41.200 the doctor really needed to see the individual  with dementia in person. And then finally just   00:08:41.200 --> 00:08:47.440 getting comfortable and managing the technology to  have telehealth appointments was a new challenge   00:08:47.440 --> 00:08:52.800 especially for older adults and individuals with  dementia. Here you see the caregiver describing   00:08:52.800 --> 00:08:58.800 that the gentleman on the phone was trying to  help the individual with dementia get set up for   00:08:58.800 --> 00:09:05.120 that telehealth appointment and just really  you know belittling the individual dementia   00:09:05.120 --> 00:09:12.320 for not knowing how to use a computer, and so the  individual with dementia ended up feeling ashamed. 00:09:13.440 --> 00:09:18.800 So in conclusion, there's I think many  implications here, but older adults living   00:09:18.800 --> 00:09:24.640 with dementia are very complex patients. They have  multiple comorbidities often that makes their care   00:09:24.640 --> 00:09:31.680 management very challenging particularly in a  pandemic context. And so when handling care,   00:09:31.680 --> 00:09:35.360 I think one of the recommendations I would  put forth is that health systems really   00:09:35.360 --> 00:09:42.000 need to consider the role of caregivers in patient  healthcare and making sure that they have plans   00:09:42.000 --> 00:09:47.840 for how they can safely involve caregivers in  these appointments and in future care planning. 00:09:48.560 --> 00:09:55.360 So thank you so much for attending today and  of course much gratitude to my participants who   00:09:55.360 --> 00:10:02.000 gave of their time during a crazy pandemic  to share their stories with me. Thank you.