DR. HALIMA AMJAD: Early diagnosis is one, just being able to name and understand what's happening.

And then it's also helpful just to be able to plan for the future.

RICK GOW: The numbers are staggering when a person goes in for care and can be in a memory care facility for a decade.

YOLANDA WRIGHT: People need to talk about it.

ROBERT FERRIER: Hello and welcome to SPENT Discussing Dementia.

I'm Robert Ferrier, the Director and Co-producer of our documentary short film, SPENT, The Hidden Cost of Dementia.

We're producing this panel discussion as a companion to our documentary.

So if you're tuning in having just watched it, that's great.

Thank you.

But it's certainly not necessary to have seen the film before watching this panel discussion.

If you're in the throes of this disease and trying to manage its costs and have more questions than answers, then this half hour is for you.

DAPHNE GLOVER FERRIER: Hi, I'm Daphne Glover Ferrier, and I'm the producer of SPENT the Hidden Cost of Dementia.

And in 2013, my mom was diagnosed with vascular dementia and basically her doctor handed us a brochure and kind of told us good luck.

And all of a sudden we found ourselves confronted with, not only all of the emotional feelings that go with having your loved one diagnosed with dementia, but also with facing what were to us, just staggering costs.

And we were really a family in crisis.

We sort of realized as we were on our own journey, that there are many, many costs associated with dementia, from stigma to isolation, sadness, grief, and of course the financial.

And my family has had a first-hand experience with all of these costs.

And so, as filmmakers who work a lot in the public health filmmaking realm, we really thought this is something people need to be talking about.

And these are very difficult issues to talk about, but film can really help people open up a door and start a dialogue.

And we just felt like this could help reduce stigma, raise awareness, and let people know that there is help out there.

And so if you are a person who has just been handed a brochure and you do not know what to do, here's a place to start and you're not alone.

R. FERRIER: And we're happy to say that we're joined by an amazing panel of experts in the field of dementia, dementia care, and finance.

First I like to introduce Dr. Halima Amjad.

Dr. Amjad is a geriatrician and Assistant Professor of Medicine in the division of Geriatric Medicine and Gerontology at Johns Hopkins University.

Her clinical and research activities focus on improving care for people and families living with dementia, including understanding whether and how early diagnosis may be beneficial.

She sees patients at the Johns Hopkins Memory and Alzheimer's Treatment Center.

Her father has frontotemporal dementia diagnosed when she was graduating from medical school.

Dr. Amjad draws many of her insights and research topics from challenges her family has faced.

D. GLOVER FERRIER: And also joining us is Rick Gow, welcome Rick.

And Rick is a wealth advisor, founder and President of Life Plan Retirement Partners and member of the Society of Certified Senior Advisors.

He's a nationally recognized speaker on many topics from long-term care, financial planning, to tax mitigation planning strategies.

Rick graduated from the Northern Virginia Community College and attended George Mason University before beginning his career in insurance and in finance.

He has provided long-term care, comprehensive financial planning in over a dozen states coast to coast.

Rick Gow was nominated by his peers and selected for Northern Virginia's magazine's top financial professionals list in 2015 and 2016.

R. FERRIER: And, we have Yolanda Wright.

Yolanda joins us with a background in social work.

She earned a bachelor's degree from UNC Greensboro and began a career working with special needs children and their families in the Rowan County, North Carolina public school system.

Yolanda moved to Maryland in 1989, and for the next 23 years worked within the home health and hospice field at numerous positions, including social worker, bereavement coordinator, and program coordinator, as well as receiving her masters in social work at the University of Maryland, Baltimore.

Yolanda Wright joined the Alzheimer's Association, Greater Maryland Chapter in October 2012, as the Early Stage and Support Group Coordinator, bringing with her 42 years of social work experience with dementia, grief and loss on both the professional and personal level.

Thank you all so very much for joining us today and discuss some of the leading issues facing families grappling with dementia and how to manage its costs.

D. GLOVER FERRIER: So, Halima, if we could start with you.

So how does one sort of begin, like if you- how does one know what memory... loss is part of the normal aging process and how does one know if maybe something else is going on?

We're all familiar with not knowing where keys are or, for me personally, forgetting people's names.

But when do you know that something else is going on, maybe with you or with a loved one, and when is it time to come see a doctor or a professional?

DR. HALIMA AMJAD: It's a great question, Daphne, and as you pointed out, normal experiences can be just that, normal.

So not being able to find your keys, not being able to find your phone, sort of phenomenon that we all experienced can be just part of normal aging.

What is important to look for is, are some of these issues happening too often, or increasingly often to the point that they're distressing or very anxiety provoking?

Are you finding those objects in strange places where you absolutely wouldn't expect them?

And then also looking at whether these types of symptoms are starting to make activities harder, activities like driving or managing finances or medications, are those activities getting more challenging?

And then it's also important to look for just sort of really strange or weird moments where you start to think, this is beyond just what my friends experience or what my elders experienced.

I think any time a patient or family is noticing these types of symptoms, if it's causing them any distress or causing them any anxiety or concern, that's where it's time to bring it up to a doctor who can then ask more questions of both the person who's concerned, the patient, and the family members to really better tease out, could this just be normal, cognitive aging, could it be cognitive symptoms or memory symptoms due to something else, or are the symptoms they're experiencing more concerning for a form of dementia.

D. GLOVER FERRIER: And talk a little bit about, why is it important to get an early diagnosis?

So I'm sure a lot of people are nervous to get the diagnosis, but how can it really be beneficial to either yourself or to your loved one to get that early diagnosis?

DR. AMJAD: That early diagnosis piece is something that I've certainly thought about in our family, how would our trajectory have changed had my dad's dementia been diagnosed earlier?

Unfortunately there aren't extremely effective treatments.

So it's not that we think that decline would have been significantly prevented if it had been diagnosed earlier.

But areas where we certainly see that patients and families appreciate a diagnosis is, one, just being able to name and understand what's happening, why there's problems with memory, why somebody's personality is different, why they're more irritable, why they're having trouble making decisions.

Just having that understanding of why it's happening and that it's a disease, is helpful.

And then it's also helpful just to be able to plan for the future.

So for us as a family, my father's diagnosis, it was an early onset dementia.

He was actually working.

And so it would have been helpful for us to understand that in a few years, he's not going to be able to continue his job.

It's helpful for families to be able to plan financially, to think about how better to support that person who's living with dementia.

They might be living alone.

They might still be driving.

They might be managing finances.

And how can you come around that person to support them before a time of crisis or before you know, a major injury or major harm, whether that's financial, physical, or otherwise.

R. FERRIER: Rick, if you can give a general term of, what kind of costs are associated with long-term care with dementia, I guess memory care?

RICK GOW: Sure.

Actually probably one of the most expensive, other than skilled nursing costs, meaning for the most in need acute care type level, memory care can run, of course, depending on where you are in the country, but it can run $10,000 per month.

It can even be higher if you're in Washington D.C. downtown, it can be lower if you're out in the burbs or further out.

But it's relative, as we well know, because if you live out in the burbs and way out in the country, so to speak, those costs are lower, but your income typically is not as high as well.

And so it can be very difficult for families to quickly adjust, to try to figure out, how do I cover a cost like that?

And I think like Dr. Amjad's comment about that early diagnosis, hopefully giving you some help earlier on, one of the other components of that is having documents in place, planning from an estate perspective.

D. GLOVER FERRIER: So let's say they've gone to someone like Dr. Amjad and they'd got this diagnosis and they turn to someone like you, what's the first thing you're telling families to do?

What sort of a checklist?

[crosstalk] GOW: Right.

So, right out of the box, the first thing you're trying to do is, you're trying to find what sources of income do I have?

Maybe they were a veteran, and so we want to see if we could maybe look and get some veterans benefits.

Maybe they had some form of policy, a life insurance policy that had a component that if you became chronically ill, that we might be able to pull from, or an annuity that would increase their income stream.

R. FERRIER: We've found, what is driving these costs, it's the day-to-day care, unlike other diseases where you have either there's medication or an operation, dementia, there is no cure and it could last for years if not decades, but it seems because it's not covered in Medicare, you know, care is not covered under Medicare, those costs are shouldered by the family.

GOW: Yeah.

And some of the challenge there is, you've maybe got a husband and wife and the husband or the wife is the person who needs the memory care facility taken care of, that can completely impoverish the spouse.

And so there are some planning things that you can do so that you didn't save all that money, that nest egg for retirement, and now that spouse is going to be left destitute.

There are some things that you can do, thankfully.

D. GLOVER FERRIER: So, Yolanda, let's talk a little bit about beyond the financial costs.

Tell us a little bit about what some of the other costs are that the people are dealing with as they go on this journey.

YOLANDA WRIGHT: Well, Daphne, you certainly know that it's a roller coaster of emotions, but there's so many things.

We have over...11 million caregivers or Americans that's providing unpaid care in the United States.

And those can be full-time, part-time and even long-distance.

But some have to stop their work.

It depends on where the person is and the progression of the disease, if they have to quit work so that they can be full time.

But then we'd look at the part-time, and I think of, in the film, Kim who is still working her full-time job, and now she had to get a second job because he's not able to work.

And Jeff sees this and that's one of the hard things too, for the person with dementia is in early stage, because they can recognize sometimes all of these changes and they feel helpless and hopeless, and that they're not bringing in and doing their part.

And some- some of them feel very guilty about that.

But it's very common.

And caregivers have to deal with all of these changes and they also have to be the one to make the changes.

So learning how to re-communicate with them, it's very hard.

But a lot of them they have to just put their life on hold.

And so they become socially isolated from a lot of their friends, and the life as they knew it.

And I encourage caregivers I deal with and work with, is to just you know, it's hard for any of us to ask for help, but just be bold and say, I was wondering, could you, fill in the blank.

And some, they finally get the nerve where that they are just so, spent that they have to do that.

And then they're glad they did afterwards, but it's hard getting started with that because our pride stands in the way.

D. GLOVER FERRIER: I liked that analogy and I'm sure I probably got it in one of the Alzheimer's Association sessions that I went to when I was going through this, but where they liken it to, if you're on the plane, you have to put your own oxygen mask on- GOW: That's it.

D. GLOVER FERRIER: -so that you can help your kids and everyone around you.

So I do think that is really an important aspect of being a caregiver.

You have to take care of yourself so you can be a good caregiver.

WRIGHT: That's one of the main things that we talk to caregivers about also, is just that very thing.

And if they are part of a support group each month, asking them, what have you done for yourself?

Because unfortunately, I've seen it with my time with the Association is, the caregiver passes away before the person with dementia because of that very reason, they didn't take care of themselves and take care of doctor's appointments and all of that.

And it's very sad and it's very easy to get in that routine of taking care of the person and not yourself.

But we have to remember how crucial it is for our own health and being there for our loved one.

R. FERRIER: I'm sure.

And Dr. Amjad, when you are seeing your patients, you're not just seeing your patient, you're seeing the patient's family.

DR. AMJAD: Yes, definitely.

And I would say, especially as the disease progresses, actually we spend more and more time talking with the family and the caregiver even than the patient and, as Yolanda was alluding to, the caregiver is really the key to that person's care.

And so a lot of what we have to coach them on or instruct on in terms of how to communicate, how to handle difficult behaviors, are all really adjustments that have to be made on the part of the family.

So it's really working with them and identifying how they can support that individual.

And a lot of times that also gets to, how can we pull other family or friends in who may be uncomfortable or ask how can I help, but then never really come through.

And that's where caregivers have to get out of their own comfort zone and concretely ask for specific visits, specific tasks and make sure that they don't become iso- isolated as well.

R. FERRIER: I know we talked about this, Dr. Amjad.

What's your hope for the future for this?

DR. AMJAD: Well, I think one hope is just through films like this and other efforts that we normalize discussions and conversations about dementia.

It's a common disease, yet I think as a society and as individuals, we're often uncomfortable with it.

Patients and caregivers will often talk about, if I had cancer, people would rally around me, when it's dementia, people tend to shrink away.

And so how can we start to normalize discussions?

Have people become more comfortable with the fact that this is another disease that exists, and we have to grapple with this again, as individuals, families, and societies?

And I think in recognition of that, I think another hope that I've taken away is that the government really has been putting more and more money into research, the same way that a lot of money has been put into cancer research, has been put into HIV research.

So we certainly, as a medical community, hope that in the years and decades to come, that that money will translate to more effective treatments as well, which of course gives patients and families a lot of hope for the future.

R. FERRIER: Absolutely.

D. GLOVER FERRIER: Absolutely.

Lead economist Julie Zissimopoulos in the film, SPENT The Hidden Costs of Dementia, one of the things she says is, it doesn't have to be a home run, it doesn't have to be the cure, just something, a medication that might- R. FERRIER: Delay.

D. GLOVER FERRIER: -delay you know, the inevitable, but so long that somebody eventually dies of something else.

But in the meantime, they get to participate in society and be part of their family and see their grandchildren grow up and all the things that give our life meaning.

And I love looking at it from that perspective, that, hopefully that is on the horizon.

R. FERRIER: And, Yolanda, what advice would you give families that are looking for something, looking for a way to sort of cope with what's going on in their lives?

What are you- what are you telling um, folks?

WRIGHT: People need to talk about it.

They need to be able to talk because- you had mentioned earlier on I think at the beginning, about grief and this is something that needs to be talked about and discussed.

And actually with each piece of change that the person goes through, you're going to have the degree of grief that you will experience with that loss of ability.

And they just need to feel they're not alone.

And so that's where a lot of times support groups and things like that will come into play and very helpful.

But it's just really important to get connected.

And I'm hoping that my grandbabies will not even know the word Alzheimer's or dementia, and that's kind of where I take it.

But for people who are in it now, that there is care and support and people out here to help them.

D. GLOVER FERRIER: And I think, Yolanda, when we were speaking earlier, you had mentioned also there is still opportunity to still have joy and a lovely interaction with your loved ones, if you just learn to be in the moment with them.

And I think that's important.

R. FERRIER: And that is key.

That is key, is to just go with it, I think be in their space, right?

And be in that moment.

WRIGHT: And that's why it's so important to have the education as caregivers.

We do a lot of education for them.

The other thing is that they're in their own reality.

And so we cannot, we cannot, as much as we try to push, we cannot bring them into the real reality, our reality.

So I think that, again, just the education, knowing these things.

But just embrace those moments.

And when they smile and look at you and say, I love you, just cherish that, embrace the moments of clarity.

D. GLOVER FERRIER: And, Rick, what about you?

What do you find for your... some hopeful... GOW: Yeah, I'm pleased that the financial industry, actually, a number of years ago instituted what's called the trusted contact.

There's a form that's now required that says who would be a trusted contact in the event that you Mr. or Mrs. Smith are having problems.

And I, as a fiduciary of your wealth, think that maybe something's not right.

Who can I call?

I won't- I can't talk to them about your... business, but I can talk to them about something I'm noticing.

So the industry has stepped forward to say, we're going to create at least a form so that an individual might put down someone that you could reach out to, and at least bring up a subject to start a conversation that was not started before.

So that's a good thing.

We're still way behind.

1 in 10 individuals has a long-term care insurance policy, and that's the vehicle that could truly help on the front end, right out of the box.

R. FERRIER: And I know that, now a lot of insurance companies aren't writing those policies any longer.

They realize that they're kind of like paying out a lot of money because people are living with dementia for long periods of time.

So if you can even get a long-term care insurance policy, that's one thing.

And then, if you can even afford it.

So there's all these different- D. GLOVER FERRIER: But if you have it, don't give it up.

R. FERRIER: Yeah.

GOW: And that's...

I mean that's tough.

R. FERRIER: Dr. Amjad, I'm sure in your experience with your dad, and of course with patients, that's really important to impress upon them, to be in the moment.

DR. AMJAD: Yes, definitely.

I think when people get the diagnosis, they immediately picture sort of worse case scenario that, oh, I'm not going to recognize my family.

I'm not going to be able to speak.

That's where I often have to sort of ground them, and that's not you, right now.

Right now, these are the things that you're able to do that could be years down the line.

And like you said, I've definitely reflected on it in my own family, which is that I certainly wish my dad hadn't been diagnosed with dementia, but he's been living with it for 12 years now.

And in that 12 years he's watched two children get married, all three of us establish careers.

He's had nine grandchildren born in that time.

And so for us, it was meaningful to have him here, even if it wasn't in the exact form that you know, we would have loved to have him, but it still has been a meaningful time.

And we've had a lot of precious moments in there that you know, we wouldn't trade for anything.

R. FERRIER: That sounds fantastic.

I love that too.

R. FERRIER: And we hope that this... programs like this will get the conversation started, right?

That's the most important thing.

And I think, Yolanda, you said it earlier, it's that we got to get people talking about it, and it's been our mission as well, is to... That's why we did SPENT The Hidden Cost of Dementia.

And with this follow up program, it gets the conversation going.

And the more people talk about it, the more people are aware of what's happening, not only maybe in their own family, but also in our country at large and in the world.

This is not just isolated to the United States, and hopefully maybe it'll affect change either in a policy way with our Government or at least within family units, right?

D. GLOVER FERRIER: Yeah.

DR. AMJAD: And I think that's a great point because I think for me, if these types of conversation can spur change on a policy level, the amount of people who think Medicare is going to cover the care that they need and then are struck by, no, there's no payer for this, and especially as dementia gets more prominent, it's certainly an area where I think all of us want to see change and improvement.

WRIGHT: One of the wonderful things is that we have a great advocacy program.

We paint the town purple in Annapolis and Washington.

And we have um... support on both aisles, which we are so, so happy about.

So we'll say, you know purple- I mean red and blue, makes purple and the purple is the Alzheimer's color.

But I just think that all of that is things that we can use for our hope.

Very important.

R. FERRIER: Thank you to all of our panelists today for their expert advice and thank you all out there for watching.

We hope this has been helpful to everyone.

D. GLOVER FERRIER: But please remember, there's help out there if you need it and you can visit our website, spentdementia.com for both national and State by State Resources, or you can call your local Department of Aging.

Thanks so much.

And we look forward to seeing you soon.

R. FERRIER: Thank you all.

D. GLOVER FERRIER: Bye.

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