We’re revisiting this episode because its insights remain as powerful and relevant today as when it first aired.
In today’s episode, Lisa discusses talking to your children about Alzheiemer’s disease. Many of the highlights of this episode include:
- Tips on how to approach the topic effectively.
- How to best prepare your child to visit a loved one living with Alzheimer’s disease.
- Talk to them about what they might experience when visiting a loved one living with Alzheimer’s disease.
- Specific examples of what to say to your child to help them better cope.
- Resources available to help your child process a better understanding of Alzheimer’s disease.
And, much, much, more…don’t miss this informative episode!
About the Host:
Author Lisa Skinner is a behavioral specialist with expertise in Alzheimer’s disease and related dementia. In her 30+year career working with family members and caregivers, Lisa has taught them how to successfully navigate the many challenges that accompany this heartbreaking disease. Lisa is both a Certified Dementia Practitioner and is also a certified dementia care trainer through the Alzheimer’s Association. She also holds a degree in Human Behavior.
Her latest book, “Truth, Lies & Alzheimer’s – Its Secret Faces” continues Lisa’s quest of working with dementia-related illnesses and teaching families and caregivers how to better understand the daunting challenges of brain disease. Her #1 Best-seller book “Not All Who Wander Need Be Lost,” was written at their urging. As someone who has had eight family members diagnosed with dementia, Lisa Skinner has found her calling in helping others through the struggle so they can have a better-quality relationship with their loved ones through education and through her workshops on counter-intuitive solutions and tools to help people effectively manage the symptoms of brain disease. Lisa Skinner has appeared on many national and regional media broadcasts. Lisa helps explain behaviors caused by dementia, encourages those who feel burdened, and gives practical advice for how to respond.
So many people today are heavily impacted by Alzheimer's disease and related dementia. The Alzheimer's Association and the World Health Organization have projected that the number of people who will develop Alzheimer's disease by the year 2050 worldwide will triple if a treatment or cure is not found. Society is not prepared to care for the projected increase of people who will develop this devastating disease. In her 30 years of working with family members and caregivers who suffer from dementia, Lisa has recognized how little people really understand the complexities of what living with this disease is really like. For Lisa, it starts with knowledge, education, and training.
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00:00:00
Lisa Skinner: Welcome back to another brand new episode of the
00:00:04
truth lies and Alzheimer's show. I'm Lisa Skinner, your host, and
00:00:09
today I want to talk about a very important subject, and
00:00:16
this, to me, is something that all families should take into
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consideration when they have small children, adolescent
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children, even teenagers, and they are experiencing a loved
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one, like a grandparent who is living with Alzheimer's disease
00:00:37
or related dementia. And the reason why this has become an
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important topic to me is because in the 30 years that I have been
00:00:50
helping families navigate the heartbreaking challenges of
00:00:56
living with Alzheimer's disease or related dementia, I have
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heard over and over and over again from adult children that
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when they were little, and I'm talking about young children to
00:01:15
adolescent age to teenage, that they remember having a
00:01:22
grandparent who was living with Alzheimer's disease dementia,
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and it freaked them out, and they're still carrying this with
00:01:35
them into their adulthood, because it was such a scary or
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an intimidating experience for them to see a grandparent who
00:01:47
was talking about things that didn't make sense and displaying
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behaviors that they didn't understand. And you know, I can
00:01:57
really relate to that, because you all know my story dating
00:02:01
back 50 years when I went to visit my grandmother and she
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starts telling me about birds living in her mattress that come
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out at night and peck her face. And I'm sitting there just
00:02:14
flabbergasted that my sweet little grandmother is telling me
00:02:18
these preposterous stories. And as it turns out, a lot of adult
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children that I've talked to in the last 30 years tell me they
00:02:31
were kind of traumatized by visiting a grandparent
00:02:36
experiencing their dementia, but nobody ever explained anything
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to them. Nobody ever gave them a warning about it. When they went
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to visit. They just the parents just took them there, and this
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was not the grandparent that they were expecting to be
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visiting. So I thought it would be really important for me to
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share with you some recommendations and tips and
00:03:07
advice on how to talk to your children if you do have a family
00:03:14
member who is living with Alzheimer's disease or related
00:03:18
dementia, and some of the appropriate and and positive
00:03:23
ways to approach the subject. But the point being, and I
00:03:28
emphasize this strongly, the point being, is prepare them for
00:03:33
it. It shouldn't come out of left field that, oh, we're going
00:03:39
to go visit grandma at the memory care unit, and they don't
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even know what a memory care unit is. And you go there, and
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they have no idea that their grandma has this, has
00:03:49
Alzheimer's disease. And then they see all these, you know,
00:03:52
peculiar things that might, you know, really leave a mark on
00:03:58
them. So here are some examples of how you can implement talking
00:04:05
to children about Alzheimer's disease. And again, the ages are
00:04:11
going to vary, so you need to adapt your approach to be age
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appropriate depending on the age of the child. So number one is,
00:04:22
you want to use age appropriate language. For a young child, you
00:04:27
might say something like, grandma's brain is sick and it
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makes her forget things. Sometimes, for an older child,
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you can adjust that to say, Alzheimer's is a disease that
00:04:41
affects the brain and causes memory loss and confusion. And
00:04:46
then you might also use other specific examples, like so,
00:04:51
because grandma's brain is sick, she also might talk about things
00:04:56
that to you are not going to make sense. Sense, but they
00:05:01
definitely make sense to her, so just accept what she's saying,
00:05:07
because it has to do with the changing brain that's happening
00:05:14
to her right now, something like that. Number two, be honest,
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Grandpa has Alzheimer's disease, which is a condition that
00:05:25
affects his memory and his thinking abilities. Explain the
00:05:30
basics to them use a simple analogy, like comparing the
00:05:35
brain to a computer that isn't working properly anymore. This
00:05:41
might sound a little odd, but you want to emphasize to your
00:05:46
children that it's not contagious, because kids have
00:05:51
wild imaginations, and they know they catch germs when they're at
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school and places like that. So even though that sounds a little
00:06:00
odd and peculiar. Just reassure them that Alzheimer's disease is
00:06:04
not like a cold or the flu. You cannot catch it from grandma. By
00:06:11
all means, encourage them to ask questions. Here's an example. Do
00:06:18
you have any questions about what Alzheimer's disease is or
00:06:22
how it's affecting grandma, and let them ask you whatever is on
00:06:28
their minds. Discuss the changes in behavior that we see with
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Alzheimer's disease, and you might say something to the
00:06:38
effect of sometimes grandma may repeat things or get confused.
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Is it because of her illness and not because she doesn't love us?
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It's also important to highlight ways that we can support our
00:06:57
grandparents or our loved ones, by saying something to the
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effect of, you know, we can help Grandma by being patient, by
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spending time with her and showing her love and
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understanding, and then, of course, validate their feelings.
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It's okay to feel sad or confused about grandma's
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illness. I feel that way sometimes too you can offer your
00:07:24
children resources by providing a children's book about
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Alzheimer's disease or showing them a video that explains the
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condition in a way that they can understand or relate to. You can
00:07:39
seek professional help if needed, if you ever feel
00:07:43
overwhelmed or have a lot of questions about grandma's
00:07:47
Alzheimer's disease, we can talk to a counselor together to help
00:07:52
us understand and cope with it better. By using these specific
00:07:58
examples, you can have a more effective and supportive
00:08:03
conversation with children about Alzheimer's disease, and of
00:08:08
course, again, remember to adapt your approach based on their
00:08:13
age, their understanding and their emotional needs. Another
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approach is to use storytelling, create a simple story or
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narrative to explain Alzheimer's disease to your children. You
00:08:30
can use characters or scenarios that they can relate to in order
00:08:34
to make the concept more understandable and relatable.
00:08:38
You can involve them in caregiving, depending on their
00:08:42
age and maturity level, involve them in simple caregiving tasks
00:08:47
for the loved one with Alzheimer's. This can help them
00:08:51
feel like they are contributing and also understand the
00:08:55
challenges that their loved one may be facing on a day to day
00:08:59
basis. Have them you know, interact with them in an
00:09:04
activity or something like that. Encourage empathy and
00:09:09
compassion. Teach your children about empathy and compassion
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towards individuals with Alzheimer's. Help them
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understand that their loved one may actually
00:09:23
may act differently due to the disease, and that patience and
00:09:29
kindness are important when interacting with them, maintain
00:09:34
routines and open communication Because children may feel more
00:09:39
secure when routines are maintained. Doesn't that sound
00:09:44
familiar? We emphasize that people living with Alzheimer's
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disease, people feel safe and secure in routines and
00:09:52
familiarity, and this includes as the loved one's condition
00:09:58
progresses in. Encourage open communication about any changes
00:10:03
or challenges that arise due to Alzheimer's. You can also
00:10:09
address misconceptions and stigmas, and believe me, there
00:10:15
are a lot of them still circulating around there. When
00:10:19
it comes to Alzheimer's disease, discuss any misconceptions or
00:10:24
stigmas surrounding Alzheimer's that the child may have picked
00:10:27
up from others, educate them about the facts and help them
00:10:32
develop a positive and understanding attitude towards
00:10:38
the condition. Provide opportunities for expression,
00:10:43
encourage children to express their feelings through art,
00:10:47
through journaling or other creative outlets. This can help
00:10:52
them process their emotions and cope with the changes that come
00:10:56
with Alzheimer's disease and celebrate memories. That's what
00:11:03
they're going to take with them the rest of their lives are the
00:11:07
memories that they formed when they were younger and their
00:11:12
grandparents were healthy. So encourage children to share and
00:11:17
celebrate memories of the loved one who's now living with
00:11:20
Alzheimer's disease, reminiscing about happy times can be a
00:11:25
positive way to connect with the person and maintain a sense of
00:11:30
connection. That's what I carry with me with my grandmother,
00:11:36
yeah, the the day that I visited her, that, you know, rats were
00:11:41
invading her home and birds peck at her face. That was not the
00:11:46
grandmother I grew up with, and I knew something was wrong, but
00:11:51
the memories that I carry with me in my head and my heart are
00:11:58
the ones of us baking cookies together and laughing and and
00:12:06
helping her cater her parties and doing things like that. And
00:12:12
that's the grandma I choose to remember. Keep an eye on how the
00:12:18
child is coping with the situation and be prepared to
00:12:24
adjust your approach as needed. Children may have ongoing
00:12:27
questions or concerns, so be ready to address them as they
00:12:32
arise, especially if you're visiting fairly regularly,
00:12:36
because you know that this is a progressive illness, and their
00:12:40
cognitive abilities will continue to decline. Encourage
00:12:48
patience and understanding. Emphasize the importance of
00:12:52
patience and understanding when interacting with the loved one
00:12:57
with dementia, explain to the child that their loved one may
00:13:01
need extra time or assistance with tasks due to their
00:13:07
condition, be their role model. If they see positive
00:13:14
interactions coming from you, it'll help them understand
00:13:20
having positive interactions with themselves. Explain to
00:13:26
children that changes in behavior such as forgetfulness,
00:13:30
repetition or Mood swings are part of Alzheimer's disease, and
00:13:36
you can help them understand that these changes are not
00:13:39
intentional, and that their loved one still cares for them
00:13:44
and try to maintain a sense of normalcy. While Alzheimer's
00:13:50
disease can bring changes to family dynamics, try to maintain
00:13:54
a sense of normalcy in the child's daily life as much as
00:13:59
possible, consistency and routine can provide a sense of
00:14:04
stability for children during challenging times and educate
00:14:10
them about the progression of the disease, depending on the
00:14:14
age of the child and their understanding of what the
00:14:19
disease is doing to their loved one. Provide information about
00:14:24
how the disease progresses over time. Help them understand that
00:14:29
the loved one's condition may change, and their support and
00:14:33
love remain important. Encourage open discussions about
00:14:38
Alzheimer's disease within your family, involving other family
00:14:43
members in the conversation can positively provide additional
00:14:48
support for both the child and the loved one with Alzheimer's.
00:14:53
I like to celebrate small victories, acknowledge and
00:14:58
celebrate small achievement. Segments or meaningful moments
00:15:01
with your loved one who has Alzheimer's disease, and
00:15:05
encourage children to focus on positive interactions and
00:15:09
memories to maintain a sense of connection and joy. So I'm
00:15:15
hoping that this will start to change people's paradigm about
00:15:22
Alzheimer's disease. For decades, nobody talked about it.
00:15:28
We all just our families just wanted to hide their heads in
00:15:32
the sand. I think I remember telling you that after that
00:15:36
visit that I had with my grandmother, and she told me all
00:15:40
these, you know, preposterous stories. And I went home and I
00:15:44
asked my mother, what's wrong with grandma? And she said, Oh,
00:15:49
Grandma has been diagnosed with senile dementia. That's what
00:15:52
they called it back then. I said, Mom, I just went to visit
00:15:56
her, and she's telling me all these outrageous stories. Why
00:15:58
didn't you say something, why didn't you prepare me for it?
00:16:03
And her answer to me was because we don't talk about those
00:16:09
things. And I'm telling you this, I'm sharing this with you
00:16:13
because I can't tell you how many adult children that I have
00:16:19
worked with over the last three decades, who have told me
00:16:22
exactly the same thing, we need to change this and be open about
00:16:28
it, pull our heads out of the Sands, because I'm hoping in 30
00:16:32
years, I don't know if I'll still be around, but if I am,
00:16:36
and I'm helping, still Helping Families, I want to hear from
00:16:41
those adult children how wonderful their experience was
00:16:46
visiting their grandparents in spite of their Alzheimer's
00:16:50
disease, because our family was very open and honest about it,
00:16:55
and prepared us For what to expect when we went to visit,
00:17:02
I'm hoping we could start to see a lot more of that attitude
00:17:08
change. With regard to this disease, it's very slow. I have
00:17:16
not seen things change that dramatically since the day I
00:17:21
visited my grandmother that was going back about 50 years, I'm
00:17:27
starting to see a little bit of progress in that department,
00:17:31
just since covid, but we're not nearly where we need to be. So
00:17:36
that's why I wanted to talk about this with everybody today.
00:17:40
Please, please talk to your children about Alzheimer's
00:17:45
disease. If you do have that happening in your family circle,
00:17:51
they'll thank you for it later, instead of hearing, oh my gosh,
00:17:56
I was so traumatized by visiting my grandparent who lived with
00:18:01
Alzheimer's disease and and, you know, it just freaked me out.
00:18:06
We're so far beyond that stage in our existence. So anyway, I
00:18:13
hope this has given you something to think about, and
00:18:19
you know, there are a lot of resources out there to help
00:18:22
children better understand this disease. It's not going away, so
00:18:27
a lot of us are going to be dealing with the this in our in
00:18:32
our family circles and our family dynamics. So anyway,
00:18:35
that's what I have planned for you today. I hope this has been
00:18:39
really helpful, and I'll be back next week with another brand new
00:18:44
episode of the truth, lies and Alzheimer's show. Again. I'm
00:18:47
Lisa Skinner, your host, and I hope you all have a marvelous,
00:18:52
fantastic week. Hope to see you back here again next week. Bye,
00:18:58
Bye, for now.