Alzheimer’s Disease – Alzheimer’s Association

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Transcript:

Guest:  Fran Emerson – Alzheimer’s Association

Host:  Sally Smith – Author/Resource literature on age-related disease and healthy aging

 

Sally Smith:  Welcome to Age to Age.  I’m Sally Smith.  Let’s talk.  Fran Emerson is with us today, and she is the very able and knowledgeable head of the Alzheimer’s Association in our area, the Charleston area, as well as several areas around Charleston.  She has been sharing, very generously, all sorts of great tips for caregivers, Alzheimer’s patients, patients with dementia, and that whole world that is increasingly upon us and growing in size, it sounds like.  Fran, how does the Alzheimer’s Association help?

 

Fran Emerson:  The Alzheimer’s Association provides information, resources, respite grants and support for family caregivers and professionals, everyone involved in this challenging illness.  And, in many areas in South Carolina, for example, we also have early-stage support groups for people who have been diagnosed with early Alzheimer’s who need the support of each other.

 

Sally Smith:  Would that include their caregivers as well?

 

Fran Emerson:  It would include their caregivers.  We don’t, currently, have one right here in Charleston, but it’s high on my to-do list to start one.  And we have some interested people, here, who want to do that.  So, support, you know, getting some support from your fellow caregivers is very powerful.  Some people tell me that they don’t know how they could have done this journey without the support groups, the Alzheimer’s Association support groups.  We have a 24-hour helpline.  If you call the Charleston number, for example, and we’re not there, we go home at the end of the day, that call will be transferred to our national headquarters in Chicago.  That helpline, there is a live person, 24 hours a day, 364 days a year, who will provide supportive listening and information for people, particularly those in crisis.

 

Sally Smith:  Wow.  Well, that is amazing that it’s a real person.  It might be worth calling just to know there’s a number you can still call, somewhere in the world, and get a real person.  Could you give us the local number?  I know our listeners will want the local number, as well as, is this an automatic transfer to the national number, or do you need that number as well?

 

Fran Emerson:  No.  This is an automatic transfer.  Our local, toll-free, number here is 1-800-860-1444.  That’s our toll-free number.  You call that and you will get someone in the Charleston office.

 

Sally Smith:  When you say you offer support and advice, and that sort of thing, on this 24-hour hotline, I mean, if I’m new to it and I’m having a crisis in the middle of the night because somebody is having, as we’ve talked about before, a catastrophic event, they’re very upset, very angry, and I don’t know what to do, I mean, do they give this sort of practical advice?  Do they tell you to calm down, I mean, how much can they give you, or do they just put you in touch with other resources?  Do they really talk to you one-on-one, I guess, is what I’m asking?

Fran Emerson:  It is one-on-one service.  Every person manning that helpline, and a lot of them are volunteers, helpline volunteers, they’re trained people. 

 

Sally Smith:  I see.

 

Fran Emerson:  We train these helpline volunteers, in dementia training, understanding the illness and, also, the type of call they may likely be expected to get.  So, they know how to listen.  You know, listening is probably the most important single component of a helpline call, listening, validating what that caregiver is saying, you know, you’re doing the right things, because a lot of caregivers feel that they’re not doing a very good job, you know, I’m a terrible caregiver.

 

Sally Smith:  It must be my fault.

 

Fran Emerson:  It must be my fault.  But, the helpline is there to validate and support those caregivers, and refer them to other organizations if they feel it’s appropriate, depending on what time of the day it is. 

 

Sally Smith:  Well, you know, having gone through a family situation with my mother, my wonderful mother, suddenly, you know, showing signs of becoming a child, developing child-like behavior, it was such a complete shock, you know, to go from someone who was the great fountain of information and then suddenly everything was changing.  I couldn’t believe the rapidity of, all of a sudden, going from feeling we were in control of everything to the whole bottom falling out of everything and, where to go?  There was such a vacuum there.  Is the Alzheimer’s Association the place someone can call, right off the bat?

 

Fran Emerson: Yes, it is.  I get people who call and have started to notice these things happening.  We have an office where people can come in, and I can sit down with them for ten minutes, an hour, whatever their needs are.  We have a huge library, brochures, books, including The Circle, videos, DVDs that we can lend to people and, as I’ve said before, a large supply of Kleenex, because people are devastated by the fact that their loved one is changing.  So, yes, we can do that.  We do care consultations in the home.  If people want someone to come out, I will go out to their home and just sit with them and work things through.

 

Sally Smith:  You will go to their home, or let them come in?  In other words, it’s that one-on-one? 

 

Fran Emerson:  Yes.

 

Sally Smith:  If I call you and tell you that I’m having this complete breakdown and don’t where to turn, you’d let me talk about it?  You all offer that level of support?

 

Fran Emerson:  Absolutely. 

 

Sally Smith:  Well, that’s just a huge resource, and I just wonder how many people know about that.  You have no dog in the fight, you know, you’re not an institution.  You’re not a certain service that can be provided.  You are just an umbrella organization trying to help all people who are dealing with this situation.  So, in a way, you can see the whole forest, instead of just being lost in the trees, of what’s out there, and I find that a huge gift to the community, that you offer that level of service.  So, you offer the support groups.  You offer this respite.  Now, the respite program, I’ve heard you mention several times, is a relief situation for caregivers, is that right?

 

Fran Emerson:  Yes.  In the state of South Carolina, for example, we have an actual sum of money available to every family caregiver, every primary caregiver whose looking after someone with a memory impairment illness, $500 a year.  They can apply for it annually.  And, you know, it’s not a lot of money, but it sure does help someone to stop and smell the roses when they’re overwhelmed, completely exhausted with the 24-7 job of caregiving.  People can choose to use it in different ways.  They can have a weekend away and place their loved one in an assisted living community, for example.  They can decide to have a day to themselves every week and get someone in the home, as a companion, to sit with their loved one.  They can use it for respite groups, daycare centers, in-home healthcare, or even to bring in a private sitter so that they can have a little bit of a break.

 

Sally Smith:  What a huge component to a program.  When you think what a little respite might do to keep someone in the home, as opposed to making it such a stressful situation that the person just says, I’m sorry, they’ve got to go to an institution.  I mean, what that must save society, just the dollar amount, what a gift, actually, to our whole society.  In a sense, it is, when someone does take care of their loved one at home.  Because, ultimately, the costs of not are huge and borne, eventually, by society.  So it’s wonderful that someone has thought through to that level that, you know, if they could just have a little respite, it could be doable.  And maybe many more are able to stay in the home because of that.  So I commend you on such good thinking, because, you know, it takes all kinds of things in a system to make something happen.  And, respite, you think, why respite?  But then you think about it a little further and you think, so it will work, you know, so they can keep them at home. 

 

I think it’s amazing what you do.  And, once again, Fran has given us a number that can be called, and we will also post it on our website so that people can call the Alzheimer’s Association.  It sounds to me like you’re very open and very available.  And if our listeners are in doubt as to whether to turn to the Alzheimer’s Association to find information, I encourage them to at least make the call because they might be surprised and find out just what they need to know.  Fran, could you, please, give us the website as well?

 

Fran Emerson:  This is an awesome website.  Just go to www.alz.org.

 

Sally Smith:  And what will I see on your website?

 

Fran Emerson:  You will have a menu when you go there, and you can find support groups.  You can search by county to see where the local support groups are in your area.  You’ll have a telephone number for each support group.  You can call and start attending one of those.  Educational events, seminars, we do a lot of workshops.  You’ll see those listed on the website.  You’ll see the staff members, the board of directors, and you’ll see the latest breaking news on some of the research, the research that is being done on new medications and vaccine trials, for example.  One of our major programs is called Maintain Your Brain.

 

Sally Smith:  Wow.  Well, that sounds like an awesome site, you’re right.  Thank you for sharing that with us.  And what a gift you give to our community with the Alzheimer’s Association.  We commend you for reaching out to people this way and offering so many services.  Thank you for being with us again today, Fran.  I always love it when you’re here.  Thanks to all our listeners too for joining us.  This is Sally Smith, Age to Age, saying good-bye and wishing you courage and joy on your journey.  We are all connected.

 

 If you enjoy listening to Sally Smith, you can buy her book, The Circle.  It’s the story of how she personally responded to her mother’s journey with Alzheimer’s disease.  It’s a wonderful gift of hope for anyone with a parent with dementia.  Just click on Sally Smith’s name under the Health Professionals tab on the Podcast home page.  All profits support research at the Center on Aging.  Thanks.


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