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Alzheimer’s Awareness Month: Resources for Patients and Caregivers



In this podcast, join us as we discuss the Alzheimer’s Association with Craig Wingate, Outreach and Marketing Specialist for the Alzheimer’s Association in the Bay Area, and what resources they have for both patients and caregivers.  Help raise funds to find a cure on October 13, 2018 at the Walk to End Alzheimer’s!

00:01 Zakiya Norton: Hi, welcome to Estate of Mind. Today we are speaking with Craig Wingate, who is the outreach and marketing specialist for the Alzheimer’s Association here in the Bay Area. And he is going to talk to us about the programs that they have available for those caregivers that are helping a loved one or a friend that has Alzheimer’s, as well as speak to some of the tools and resources that are available and also some upcoming events and workshops that some of you might be able to attend. Good morning, Craig.

00:35 Craig Wingate: Good morning.

00:36 Somita Basu: Thank you for being here.

00:36 CW: Thank you.

00:37 SB: We wanted to highlight some of the wonderful support services that you provide to people who are dealing with this disease. And I wanted to start with the support groups. And I was very pleasantly surprised to see that there are a lot of support groups throughout the Bay Area, and I was wondering if you could tell us a little more about them and what kind of services they provide.

00:58 CW: Yes, so the Alzheimer’s Association is a national organization. We have support groups in all of the areas that we cover. And in our area, the northern California, north Nevada Area, or Chapter, as we call them, we have over 143 support groups so that we could find a support group in Fresno, you can find a support group in other parts of northern Nevada. In all of our territory, we have support groups.

01:28 SB: Wonderful. And are these geared more towards the caregivers or for the people who are actually suffering from this disease?

01:37 CW: Both, actually. We offer support groups for caregivers and they can bring their spouses, they can bring their children. It’s like a family opportunity. And we also have support groups for people in the early stage of the disease. And the benefit for them is that they’re able to communicate with people who are going through similar situations and some of their experiences as others, so it gives them a sense of community while they experience this disease.

02:18 SB: Who’s facilitating these groups? Is it somebody from the association? Is it a doctor? Is it a therapist?

02:25 CW: Typically, it’s either one of our volunteers, who has either been a physician or a psychologist or a social worker, or it’s one of our staff.

02:36 SB: Okay. And what can people expect that would happen if they decide that they want to go to one of these groups?

02:42 CW: They would be welcomed with open arms. It’s a community, or we try to be a community in each support group. New individuals will come into a support group and they’ll be able to share their story with other people, perhaps get tactics and tips on how to provide care to their loved ones. I think that ends up being a great educational opportunity for caregivers, both new caregivers and some seasoned caregivers, to learn how to manage someone’s behavior or behavior changes due to this disease.

03:25 SB: Okay, and this is a free service that’s provided?

03:28 CW: Yes, the majority of the services at the Alzheimer’s Association are free. In addition to support groups, we also provide care consultations. That’s slightly different from the support groups, where instead of meeting in a group with other caregivers, you would meet with one of our staff members, family care specialists, and they would help walk through potential issues that may be arising, whether it’s family dynamics and how it’s affecting caregiving or just anything that requires more one-on-one engagement. That’s another service that we offer. We also have a 24-hour helpline, where caregivers can call any time, any day if they have any questions or if they just want to vent. We have live individuals who have experience with the disease to talk to someone about what’s going on and if there is something happening in terms of behavioral, or they have any questions, and your questions will be answered.

04:42 ZN: Wow. It sounds like you guys have not only a lot of support, but roadmaps for people as they move and as the disease progresses with their loved one, different tools and resources that would be available to help them through?

04:55 CW: Yes, we try to be the one stop shop when it comes to Alzheimer’s disease and other related dementias, whether that’s through education, whether that’s through support in our support groups. We also focus on advocacy. We have an Advocacy Day in Sacramento where we speak to our elected officials and inform them about potential policy and policy changes that would benefit caregivers and people living with the disease and the policies that would benefit caregivers.

05:37 ZN: Okay.

05:38 CW: And we speak to elected officials to ask that they be on board in terms of…

05:51 ZN: Making legislation and giving a voice to your community?

05:55 CW: Yes.

05:55 ZN: Okay.

05:56 CW: We’re also focused on advocacy and research. Research is a huge area for us. We raise funds through our Walk to End Alzheimer’s and our Longest Day event, which is two of our signature fundraising events, to raise funds specifically for Alzheimer’s disease research.

06:24 ZN: You also mentioned education. What kind of workshops or forums or seminars do you guys have coming up, and what do those entail?

06:35 CW: Yes, we have a number of educational forums, conferences. Ones that are coming up, actually one of mine, is the African American Caregiving and Wellness Forum or the African American Alzheimer’s Forum. That’s going to be one held here in San Jose in March, March 24th, at the Kaiser San Jose Facility on Parkway Drive. We also have another African American Caregiving Wellness Forum in Berkeley on April 21st. These are just examples of more community-specific conferences. We also have conferences for the Chinese community, the Latino community, that tend to happen in the spring. And then we have our Updates on Dementia Conference, which is geared for or towards scientists. And we have our Circle of Care Conference, which is geared towards caregivers and other individuals like social workers, et cetera. So we provide a number of educational opportunities.

08:01 ZN: That’s really great that you guys have it segmented out so that people can go and be surrounded by people that are like them. The comfort level is high, I’m sure. Do you also have programs that are geared towards LGBT?

08:13 CW: Yes. That’s definitely become a focus of ours, especially when working with people with the disease and having to have to place them. A lot of the research has been showing us that people living with Alzheimer’s, once they’re placed, they may be feeling like they have to go back into the closet or they may have to hide their sexuality. And unfortunately (not all staff and not at all facilities) but some aren’t equipped to deal with situations like that or manage individuals in a kind and understanding way, so we are focusing on LGBT outreach and education as it relates to Alzheimer’s disease as well.

09:07 ZN: That’s great to hear. I also imagine that you guys are able to provide information to caregivers when they’re thinking about making these decisions about which homes might be a better fit for them. Is that right?

09:17 CW: Yes, that is correct.

09:21 SB: Wonderful. And I’m assuming that you also have a list of not just facilities, but professionals who can help if somebody needs a specific kind of doctor, a specific kind of therapist, specific kind of financial person to manage this person’s finance, specific type of attorney, those kinds of things. I’m assuming you have those referral networks as well.

09:44 CW: Yes, we have a care resource finder. It’s a website online where people can type in their zip code and it brings up resources that we’ve found that have been useful to caregivers. And also through our family care specialists, they have that knowledge. Now, we wouldn’t necessarily say, “Oh, you should go to that source or resource, or use that resource.” But we’ll definitely provide you with a list of various resources and help you as you contact them and make those connections.

10:20 ZN: And I’m sure that can be overwhelming, so that’s nice to have an organization that’s, I’m sure, vetted these people, gotten feedback about them, and so there’s some confidence from picking somebody from that list.

10:29 CW: Exactly.

10:32 ZN: Okay. Well, it was a real pleasure getting to hear about all of the programs, and initiatives, and advocacy that you guys are doing for caregivers and those who are suffering with Alzheimer’s. We thank you for spending your time with us today to share with our listeners everything that’s available to them.

10:47 CW: Thank you.

10:48 ZN: Thank you.

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