Caring for kids when a parent has familial Alzheimer’s disease: a chat with Dr. Gelman and Dr. Sikes

When a parent develops early onset familial Alzheimer’s disease, how does it impact children and young adults? 

In this interview, Youngtimers cofounder Lindsay Hohsfield speaks with Dr. Caroline Gelman and Dr. Pat Sikes—two experts dedicated to shedding light on the challenges of navigating parental dementia at a young age.

Learn how this situation disrupts family dynamics and reshapes childhoods, and learn practical strategies for creating a supportive environment. Dr. Gelman and Dr. Sikes bring years of research and firsthand experience to address critical questions, like:

  • What can families do to help children process their emotions?

  • How can communication reduce feelings of isolation and grief?

  • What resources are available for families affected by young onset Alzheimer’s disease?

Dr. Gelman is an Associate Professor at the Silberman School of Social Work at Hunter College and the Director of the Education, Training, and Lifelong Learning Corps at the Silberman Center of Excellence in Aging and Diversity. With 23 years of experience as a licensed clinical social worker, Dr. Gelman has dedicated her career to addressing mental health issues across diverse populations and settings. Her research focuses on developing and evaluating tailored interventions for Latino family caregivers of individuals with Alzheimer’s disease and understanding the unique needs of children in families affected by young onset dementia.

Dr. Sikes is an Emeritus Professor at the University of Sheffield School of Education and a leading expert in qualitative inquiry. Since 1978, her research has explored autobiographical narratives, research ethics, and social justice. Dr. Sikes is renowned for her work on the experiences of children and young adults whose parents have young onset dementia. In 2018, she was honored with the John Nisbett Fellowship by the British Educational Research Association for her outstanding contributions to educational research and its practical applications.

This conversation reflects the unique perspectives and experiences shared with us on March 23, 2022. Insights from experts like Dr. Gelman and Dr. Sikes help us navigate the unique challenges we face as members of this community.

This transcript has been edited for clarity and readability. For the full interview, watch the video.

LINDSAY: You've both worked with families affected by early onset dementia. When parent develops Alzheimer’s disease, what are the first steps a family can take to mitigate the disruption of a child's development?

SIKES: I came to this research because my husband developed a young onset dementia when he was about 55, and our kids were 13 and 15. I could find nothing to help them or for me to understand what was going on. [That’s why] I came to do this research, and together with Dr. Mel Hall got a grant from the Alzheimer's Society UK to look at this. The first thing that I will say is it's really quite important to acknowledge and own what a difficult experience this is. It's an out-of-time experience, because dementia is normally something that affects older people. There aren't that many people around compared to the general Alzheimer's figures who've got a young onset dementia, and there are even fewer who have a familial variant of it.

So for me, the first thing is to not minimize what's happening and to acknowledge that something fundamentally disruptive and changing is going on. And that doesn't mean to wallow in self pity or anything like that, but it's to say, “Look, my family's in this really difficult situation. We need help.” And there is no shame in asking for that help. So that's where I would start.

GELMAN: I agree. It often takes a long time to get there because as you said, it's a very unusual and comparatively speaking, rare condition.

For many of these families, it'll take years to get to the right diagnosis. I do think that there's more awareness. I came to this work in 2009 because I was doing work with Latino families with Alzheimer's, and there is a genetic mutation in the Afro Caribbean population that increases the likelihood of familial early onset Alzheimer's in that population.

I was working with a family where the father was in his 30s and [had] very young children. I asked my doctoral student to look up the research on how to support these kids, and we found there was nothing. So we wrote an early paper. It was a case study, calling attention to the fact that there wasn't any research, and the importance of doing that [research]. 

That was a very frequent statement from the families we eventually worked with; there isn't tailored intervention, support, or information around early onset conditions, and much more is needed. You can feel not just out of time, as Pat so well said, but also out of place, because you will be sent to, let's say, a spousal support group for persons with Alzheimer's… but you're sitting there, and these are people in their 80s who have very different concerns. Their children are adults. You're dealing with very young children, financial instability, and often, you're talking about a two-parent earning household in which all of a sudden, one of those parents is not earning. What happens with that? 

So really, in addition to recognizing what's going on, [it’s about] reaching out.

Helpful resources for kids and teens:

Things have improved. There are more organizations, and even the traditional Alzheimer's Association and Alzheimer's Foundation have more and more information for people with young onset, but the key is first connecting, and then also connecting as a family, and communicating well. 

Another important finding is that it's a very complex condition, and it'll affect different family members very differently. Children will mute their experience, because they don't want to add to the burden that their parent who doesn't have the condition is experiencing. They will often not talk about the tremendous impact it's having on every aspect of their life in an effort not to put more pressure on the parent. We would interview parents who said, “I think I'm handling it really well. My kids seem to be doing okay.” Then we would talk to the children and they would say, “This is crushing, but I don't want to tell my mother because it would just add a burden.” 

This idea of the community and professionals, extended family, whoever we can get to support these families, to really be there, to acknowledge, and to allow family members to share whatever it is they're feeling. 

Another important finding is the societal view that we want to sugarcoat things.

We want to have a narrative of how wonderful that this family is taking care of their loved one. And we'll just let the family attend to this. The reality is that for some families, the person who was affected wasn't so very loved, right? We need to acknowledge that. Especially when the condition took a very long time to develop, there may have been behavioral and psychological changes that created real conflict and disturbance in the family, and these families really need our support.

We also want to call attention, from a public health perspective and from a policy perspective, to the importance of acknowledging the impact of this, and providing outside financial support–for healthcare, for child care, for home health aides, [and] all of these supports that will certainly improve the experience of everyone in this family.

Again, in summary, reach out for information and support. Reach out to each other, and to professionals. There should not be any inadmissible feelings. We need to be able to talk about the full complexity of the impact of this condition.

SIKES: Yeah, I would agree with that. I got my project funding in 2012, and I'd done literature surveys beforehand, and there wasn't very much. There was some stuff on young onset dementia, and there were some people in England at the dementia research centre at the University of Bradford who had looked at young people's experiences. 

The literature was generally about what parents thought about their children's experiences. It wasn't first-hand, so we spoke to the kids. We didn't speak to the parents. We spoke to 24 children and young people ranging in age from seven through to about 30.

So, it's about those youngsters' stories, because as Caroline says, they may not be as open if their parent’s around and listening. They don't want to burden them further. But the really important point, as Caroline said, is that the person isn't always a loved one, or has become not a loved one. And not loving your parent, in our society, is generally seen as not a good thing.

The truth of the matter is that having dementia isn't going to lead someone to become an easier person. Often, characteristics are exacerbated, so if there are difficulties and tensions, or if somebody's hard to get on with, the likelihood is that dementia is going to make it worse.

So then, the kid gets the double whammy of, “Oh, I don't like my parents.” In my own family, we all experienced physical, mental, and emotional abuse–perhaps my children in particular. And people say, “Oh, well, that person was not well, or they couldn't help it.”

Well, maybe they couldn't help it, but that doesn't mitigate the horrendous experience you may be going through. So, here we come again to the theme of being able to speak inadmissible things, whether they're inadmissible to you personally, or they're inadmissible within society generally.

The Alzheimer's organizations and societies want us all to live well with dementia, and to understand that the person who has dementia is still the same [person, deep down]. But as one young person said to us, “My dad wouldn't have tried to break my arm if he was still the same.”

GELMAN: Very common for the children that we spoke to had a very similar quote, “My real dad wouldn't have spoken to me that way.” You know–hyper sexualized, no filter. Those kinds of things are really traumatic for younger children. And she said, “My real dad wouldn't have talked to me that way.”

LINDSAY: When a parent is diagnosed with early onset Alzheimer's disease, there can be a significant change in the family structure and everyone's roles in it. Children may become caregivers, staying at home with their sick parent when the other parent can't be there. They may become earners as one parent may have lost their job due to the disease. The oldest child may be treated like a de facto second parent, consulted and reluctantly making decisions on important household issues.

Are these natural roles for children to take on in this type of situation? And if not, how can we include children in the care of a parent in a way that is developmentally appropriate? 

SIKES: I'll jump in there and say that none of our young people wanted to have an identity as a carer. None of them did. 

Most of the young people we spoke to were middle class. They were privileged in terms of their social and cultural capital. Financially, they weren't in such a difficult position as other families may have been. In the UK, we have a National Health Service, which makes a heck of a difference, I think, in all sorts of things. 

I think it is quite significant that none of them wanted to be thought about as carers. Though some of them did do caring, that was not an identity they wanted. And you can begin to explore why that might be, because that does then unequivocally alter the nature of the relationship.

GELMAN: I think you used the word, is it natural or normal? I don't think it's normal. 

It happens, especially in the United States, where we don't have a national health care system, and we don't have these safety nets. So for all the families that we've worked with and interviewed, that had to happen. 

Another common theme is that the extended family sort of fell away. They didn't understand what was happening. They couldn't believe it was happening. They just didn't come to the aid. So there, there was this sort of sense, almost like one of the families said, “It's almost like if it was contagious and if they were nearest, they would get it.”

And so, rather than coming together, it tore families apart, and it left these nuclear families having to deal with all issues, and having to rely on the children often, with the older child in some cases having to leave college, come back to help. So, exceedingly disruptive. 

Now, I don't think it's normal. I think that we need to have national public health and policy initiatives that make it so that we don't rely on children for this kind of care. Again, they didn't want to be caregivers.

And we had these heartbreaking quotes… like, one of the sons talking about having to get in the shower with his father, who had soiled himself, and having to clean him, and saying, “I could not believe that here I was, having to do this.” 

So they didn't want to do that, [but] they didn't see alternatives.

I think that this can be important: they wanted to figure out a way of giving developmentally appropriate roles to children. To really come to terms with what's happening, and be honest and candid with children that this is happening in the family, and what it is, and giving them words and information that's developmentally appropriate for them to make sense of what's going on. Otherwise, there can be all sorts of confusion, and a lot of self-blame. 

So that was another theme: a lot of these kids described having felt like they had done something wrong. That's why the father wasn't picking them up at the bus stop, let's say. But the father had just forgotten to go pick them up at the bus stop. So, thinking they did something wrong. 

I think it's really important that we figure out ways of supporting these families that take the burden off the children. Until that happens, we are having these children be in a position that really is too difficult for any person, let alone a child, let alone when it's their own parent. Because if you think about the trajectory, you're supposed to have a parent taking care of you, and teaching you all of these things as you're growing up. And instead, what happens with this very cruel condition is that you are witnessing your parent deteriorating in self-care, independence, and all of those things at a very difficult moment.

Anything that we can do to take that pressure off these children, we need to do. And we need to find developmentally appropriate ways for them to help take care of parents. For example, maybe a child can read to their parent out loud, but not clean them if they're soiled. That's an important conversation for us to be having.

SIKES: We saw some examples of parents being really thoughtful in how they had talked about it. For one of our youngest people, their dad had become hypersexualized. So the mother had changed bedrooms. She slept in one room, and he slept in the other. One of our data collection strategies was for participants to do “my home, my day” exercise. So you drew a picture of the house and talked about what happens in each room.  The boy talked about how his dad slept in a different bedroom from mum, because he would jump on mum a lot in the night, and she didn't get a good night's sleep. Little things like that, but we thought, well, that's something that a six-year-old can understand. Somebody jumping around and playing about, you don't get a good sleep. 

One of the things that comes out of some of the things that Caroline was saying is that many of our participants couldn't rely on their parent to do the sorts of things one would expect a parent to do.

A number of people talked to us about what they called “cancer envy”. When we then disseminated this, they would say, “I thought [I was] the only person who thought that [I wanted my parent to have cancer].” So they would say, “Well, I'm really envious of my friend whose mom's got cancer. And yes, I know she's going to die, but she can talk to her about it.”

LINDSAY: Sometimes people find it unfair that at this really important time, when you're reconciling the loss of your parent, your parent isn't there, helping you reconcile that. 

That leads to my next question. Children may be facing strong feelings of grief, anger, and fear, during the disease and after the person has passed. What can parents and other supporting adults do to help children address these feelings? 

SIKES: I don't think we deal with death very well on the whole, regardless of what it is. Lots of people have said it's taboo to talk about death and dying. I think more honesty about death, and not using euphemisms [helps]. We don't say passed; we say died or dead, because this is what has happened. Allow them to say things like, “This isn't my dad, or this isn't my mom.” Often, schools and teachers who come into contact with these young people are reluctant and afraid of talking. So, I think there's a place for a lot of death education, generally. 

GELMAN: It's also a constant loss, right? There's all sorts of things that get lost, including memories. One of the things that was very striking to me is when the kids were very young, they were worried they're losing the few memories they have of when the parent was well, so that's one type of loss.

The person will die; that's another type of loss. 

There are all sorts of losses. You lose friends. You stopped going out. A lot of these kids talked about things like, you can't bring anyone home, because you're worried what your parent is going to do. And you can't explain it. You can't have a “normal childhood.” 

A very common thing was for the other parent to try and take over. Camping with the Boy Scouts, for example. But everyone else had their father there. And the mother, it just didn't seem right. So the kid told them, “Please don't come anymore. I'm just going to quit Boy Scouts.” Constant loss.

Another thing that we don't talk enough about: even in the cases where it's not familial, the fear that this is going to happen to you, so you're already thinking ahead. That loss (or that potential loss) that this could happen to you, and you will go through this as well. That was a very common concern, and an existential crisis for very young people.

One of the mothers said, “My kids are having to deal with things that most adults will never have to worry about, and they're 10 years old and 12 years old. Here we are, having to attend to these really difficult things.” I think that it is very important to have the space and the time and as a culture where we have all these euphemisms, we should just be able to be really clear with people.

And there is the role of religion. Some of these families were very religious, and that's what sustained them. They had to find some meaning: “God wants this to happen.” Even just practically, the church provided a lot of support for some of these families–respite care, food, those kinds of things. That's very important.

But I do think [there is] this constant loss, and trying to find a way of helping the families talk about it, and be honest, and express their feelings, and more. 

SIKES: There is very little information out there about what might happen and what the stages will be.

We know the disease progresses at different trajectories and speeds, and that not everybody goes through the same things, but there is information out there about what might happen next. When I talked about this with the Alzheimer's Society, they are reluctant to say as much as they might about what one might expect, for fear of frightening people.

Sometimes, what you anticipate might be more frightening than what's actually going to happen. One of the most striking quotes from our study was from a young man who was at university and he went away and came home throughout his father's illness. And he said, “Every time I see him is the worst he's ever been and the best he'll ever be.”

Because there doesn't tend to be any improvement. But if people knew that they could be given some idea, which they can find, but you've got to do a lot of work to winkle it out. If you could have some notion, “this might happen, it might not, but it might happen.”– I think that would help some people.

LINDSAY: The children you talked to who said that it was extremely disruptive to have a parent with young onset dementia. How can we change that? How can we help children feel comfortable to share their true feelings about the situation?

SIKES: In our study, people tended to think they were the only person who was in this position. 

One thing that we did, which in traditional research would probably be considered to be inappropriate: we put people in touch with each other. And the people said, “That is just SO helpful.” 

[Something that helps is] putting people's stories out there. If people are willing to share and to talk, I think that that's really helpful.

GELMAN: All of the people that participated in our study said they were doing it because they wished that they had been able to hear from somebody who had had the experience. It was a very altruistic thing to do: to share their stories, and to let others like them know what had happened. 

Our studies are published in scientific journals, so it's not getting out to the public, so we appreciate you interviewing us. Our ultimate goal is to help other children and young adults having this experience–[letting them know] that there are others out there who have had the experience, there are things that you can know.

I agree with Pat; these children tell us they would much rather know the continuum of what can happen, than to be constantly shocked and surprised. It's like driving with your eyes closed, right? You'd much rather know that there's going to be a bridge, and to have an expectation and some guidance as to what's happening. So I think that we do need to do a much better job about describing that. 

One of the difficulties is that it is such an individualized experience. But that can be said, as well. 

[We should] create communities of support. The older kids that we interviewed had very altruistic feelings about wanting to help their younger selves.They want to work with younger kids. 

I have this beautiful story of one of the kid we interviewed, who at first had told us that he wanted to be a doctor, because he wanted to help people like his father. A few years later, his mother calls me and says he's graduating from college, and he actually decided he wants to be a social worker, because he remembers me and my doctoral student, and that we were super helpful. We sat and talked to him and the questions we asked helped him think about things. The questions we asked helped him and his sister and his mother talk about what was actually happening. He graduated last year with an MSW, from my program. It's such a lovely story. 

We want people in these situations to know that there are others out there. Your organization [Youngtimers] is a wonderful place to start, for people to connect with each other. There are a few camps, and what the kids [we interviewed] recommend is to get somewhere and have somebody know what you're talking about when no one else understands that.

In the United States, there's only between 200,000 and 500,000 people that have young onset Alzheimer's. It also affects your kids, your spouse, your parents–a lot of people. But in real numbers, it's likely that even in a huge area like New York  there's not going to be that many. 

You're not going to have another person in your school. Or they're going to say, “Oh yeah, my grandma had it.” Doesn't help, right? It does not help, because your father shows up screaming at school, wearing underwear on his head (which happened to one kid). That's not going to help you.

LINDSAY: Some of the families in your study took part in individual or family counseling sessions. You recommended that they participate in a support group, and also ad hoc counseling, where there was ongoing consultation, case management, and referrals. Where can families maybe find these types of resources?

GELMAN: I would always say to look in community mental health centers. There are also more and more specialized Alzheimer's disease centers that are starting to consider early onset. In terms of the dynamics and what's needed, that intervention [we used] was developed for late stage Alzheimer's, but it worked.

The initial sessions are psychoeducation. And we talked about that, how important it is for these families to get an understanding of what's happening, what's likely to happen, how to respond and how to react right in a way that helps calm the situation. We helped the parents with how to work with their children.

The piece that's really important is this access to a professional. I think that any social worker or mental health professional will understand family dynamics and the importance of supporting parents in keeping children in the child position, not as a co-parent, when the other parent has young onset dementia.

Resources that may help

[I recommend] reaching out to any mental health center or Alzheimer's disease center for support. 

One of the things I wanted to do with the Alzheimer's Association here in New York City is start developing services for people with young onset [Alzheimer's]. There's been some progress in that area, but [in large Alzheimer’s organizations] the bulk of the focus is late onset.

So again, we have to carve out the space and special services for this population, who really do need the support. 

SIKES: [In England,] we have a National Health Service, and that raises people's expectations and ways of behaving with regard to their health. 

Our students who were at university got counseling. If they wanted it, they could get counseling. But a number of them talked about how, when they left university, they no longer had access to the free counseling that they had, and they couldn't afford to pay for it themselves.

We saw that if anything was going to happen for the younger children, then it was almost inevitably going to be through the volition of a parent who would go into the school and talk about things, mainly because they wanted to help their child not be the [one with the] dad with the knickers on his head. They wanted to try and preempt that.

In terms of bringing young people together, there's a rare dementia unit at the University College London, which does help some groups. But you said that number of how many people in the states are considered to have it? The number that gets tossed around in England is 42,000. And many of them won't have young children. So it feels a little bit difficult in that respect. 

[Editor’s Note: Dr Sikes is referencing Rare Dementia Support (RDS), an organization that supports people affected by familial Alzheimer’s disease (FAD), young-onset Alzheimer’s disease (YOAD) and other types of rare dementia. They have a support team that provides free information, advice and support for RDS members from before diagnosis until after bereavement. Learn more about Rare Dementia Support (RDS).

LINDSAY: In our community, people may be hesitant to talk about the disease because of the hereditary nature. For privacy reasons, they don't want many people knowing–not even their primary care physician. It can be difficult to reach out for services without disclosing information that could risk discrimination. Any thoughts on that?

GELMAN: Pat and I are doing a study right now trying to understand the complexity of deciding whether to get genetic testing for young adults in families where there are inheritable forms of early onset dementia. How are young people thinking about the possibility of testing to find out what their status is? What is the process for that? Again, the impetus for our work is our past experience. [This is] one of the huge concerns that the people we work with have. Questions like:

  • What are the pros and cons of having this information? 

  • What happens if this information gets out? 

  • What will it mean to me if I find out that I do or don't have it? 

  • Do I live my life differently? 

These young people are on the cusp of making decisions about partnerships and having children and making career decisions, so it's a very relevant question. That is the work that we're doing right now, interviewing people about their thoughts and experiences around this conversation. Do I want to know? Should I get tested? 

LINDSAY: What does this study involve? 

SIKES: It's, “tell me your story.” Tell me your story and your thinking around seeking genetic testing, given that you have a diagnosis in your family. That's important; there has to be a diagnosis of a familial variant. We have done three interviews so far, and I don't know that it's really fair to call them interviews–just say, “Tell me your story,” and then they talk for hours. 

LINDSAY: It’s really cathartic for some people to be able to talk to somebody about their experience. 

GELMAN: Both of us had that experience with our previous studies. You asked if there was counseling, and people told us talking, and the way we ask the questions [was helpful to them]. 

It's a very particular kind of research. It's a qualitative study. We're really interested in centering and honoring YOUR experience. YOU are the expert of your experience, and we want to understand that. We almost have to ask no questions. We can start with, “tell me your story around the decision whether or not to be tested for whether you are carrying an inheritable form of early or young onset Alzheimer's or another type of dementia.” 

People consistently tell us about how helpful it is to have the opportunity. We've been talking this entire interview about creating a non judgmental space to really think and talk and air out all of these very complex feelings, questions, and paradoxes. And the fact that we're doing this means that there's others like you out there, right? You don't do a study for just one person. You participate because you have something that will be very valuable to others who have your experience. Then, we find ways of making that helpful. For instance, you found us! 

So, slowly building these connections, amplifying these voices and these experiences to have a real world impact on others. Your experience can help others. We talked about not wanting to sugar coat things, but that is truly a way that something positive can come from this. That's what the young kids told us in our study. They're telling us this because they hope that their experience at least will help others. Not that, “Oh, I'm glad I went through this because then I can help others,” but “since I'm going through this, and it is so incredibly complex and difficult, I want it to have an impact on others.”

We've been reviewed by an institutional review board to ensure that the study is solid. It's meant to be supportive of the participants and it's got certain ethical standards. And, I'm actually a doctor-level clinical social worker. So we are available to support, if something happens during the conversation. 

LINDSAY: Some outsiders may have well-meaning comments like, “At least your parent is still here.” or “At least your mom or dad isn't dead.” Is this type of narrative detrimental to children and young adults with parents affected by young onset dementia? How should we change the narrative when it comes to this disease?

SIKES: I think it's really difficult. A number of the young people we spoke to talked about this. 

One young woman had brought her wedding forward [decided to have it sooner]. She wasn't intending to be married for a few more years, but she wanted to have a wedding, and I think her words were something like, “I want my mom to be there, and to really be there.” It was for her. She wanted a sense that her mother had knowingly participated in the wedding.

Because people who don't live with somebody who's experiencing dementia, it's a really hard thing to understand, and some of our people said “Well, it isn't that good. She's not dead, but she's not here, really.” And I don't know how you can really get that sense in a meaningful way if you haven't lived that experience.

We had one young man who spoke with us who was gay, and his dad was a vicar, a parish priest. And, he'd been very, very concerned about coming out to his parents about his sexuality. Eventually he did, and it was fine. It was absolutely fine. 

But then his mom's dementia develops, and she's constantly asking him when he sees her, “Oh, have you got a girlfriend? Are you going to get married soon?” This was a while back, and so it wasn't possible for him to get married, but it would be now. But he stopped saying “I'm gay.” She'd become quite homophobic all of a sudden, never having been. So, her being there was not positive to their relationship. Her being alive was not necessarily positive to their relationship because, but as I say, I think it's really difficult for anybody to fully grasp what that means.

LINDSAY: It probably leads to feelings of relief once a person dies, and then extreme guilt for probably feeling that way.

GELMAN: Exactly. So it's back to what we were saying before, of allowing everything. I think it's too much to ask. We would need societal level interventions. And even for less complex issues, like, somebody has a diagnosis of cancer, people don't know what to say, right? Even when an old person passes away, people say awkward things, right?

In this situation where it's so complicated, it's unlikely that we can create a world–we should aim for it, but–create a world where people truly understand what it is, and understand the best way of supporting these families, and in particular these children. What we CAN do is create a mini situation where these families are connected to services, where there is a professional that can mitigate that, and gives the space for the person to say how [they feel]. You're getting this pressure that you're supposed to somehow see it as noble, that you're in the shower cleaning up your father when you're a 16 year old boy, [and society tends to be] like “how wonderful of you to do that!” You don't have the space to say, “It is horrifying. I did not want to be in this position.” 

Then, you're a bad son, or you're ungrateful that he's still alive and you get to do this for him. There are all these layers. 

So can we at least get that young man in a relationship where he can say that? And somebody can acknowledge how hard that is and can acknowledge how difficult it is, and that they have a right to feel all these really complicated feelings? That it's okay to hate being in that position, and even to hate the father in that moment? Because that's just human. That's just human, and it should be okay. You're dealing with so many other things that we have empathy and compassion for what these children are experiencing, and then work from there. We have big plans to change the world, but until we get there, these are the steps that we can take.

LINDSAY: It can also be hard when a child sees or a young adult sees this happening in a parent. They may get angry, and if they don't have a way to express it, they can do self destructive things. That puts the other parent in a very difficult situation. They already feel like their child is being punished, and don't want to punish them further. What do you do in that situation? 

GELMAN: We had that very question, a mother talking about a kid who took up smoking, another kid who was drinking. How do you discipline, because they're already experiencing the worst punishment ever? What do you do? Also, you're alone as a parent.

We've been talking a lot about the kids, but one of the articles I wrote was also about the impact on the parent, not as a partner, but as a parent, and the tremendous responsibilities that then fall on that person. And again, no support for that.

SIKES: Tell me about it.

GELMAN: Right. Pat, I wish I had known you then, and I could have been providing support then. There's really so many needs, and I think it's really important to start with getting information out there, developing databases of really solid, good, reliable information that people can use, and that's helpful to them.

And the community participates greatly in that, because to me the most solid, reliable information is what that we've been gathering by asking, “what is your experience?” You are the experts, and you need to tell us, the professionals, how we can help, and how we can support, and what are the next steps, and what do we need to do to mitigate some of the really tremendous disruption. You play an important role in that, and you can make a huge difference for the next generation of young kids that will be experiencing this.

LINDSAY: One last question. Pat, you did report that dementia can also have positive outcomes on children and young adults. And I think Caroline, you also saw this as well? You said everyday occurrences that become rare and significant because of dementia. What positive outcomes have resulted from having a parent with young onset dementia? 

SIKES: I don't think anybody ever said anything about moments with dementia that were good. 

But we had one young woman who decided to go into genetics, and did her PhD in that because of her mother's condition. My own daughter became a child and adolescent psychiatrist specializing in family therapy, because of her experiences.

So, people made decisions about where to go to university, which led to them meeting ‘the one’ and stuff like that.

But I can't honestly put my hand on my heart, and say that anybody talked to us about positive moments within dementia. And that does sound negative, but…

GELMAN: I would say something similar. No one said to us like, “I'm glad this happened because then X, Y, or Z.”

But because these children are remarkably resilient and adaptive, they were able to think about some positive things in terms of what was going on. Again, I really want to make sure no one's getting a romanticized view of it, but for this boy that I talked about, [there was this idea of] helping others, and a sense of competence.

The older kids–it's too fast and too soon and too complicated–but they do develop a sense of competence that they were able to do all of these things. Now they shouldn't have had to, but they did. So there's that. 

As a social worker, when I'm working with these kids, I think that that's important to acknowledge, because it could have gone a different way. They have stepped up, and chosen to think about strengths that were developed as a result of a very difficult situation.

That is the role of the professionals supporting these families: to really allow for the parts that are real challenges and real difficulties, but also celebrate those aspects. Because these children do show remarkable resilience and altruism in speaking with us. And compassion, and intelligence, and dedication, and eloquence.

One of the boys that we worked with was writing poetry to express his feelings. Really beautiful compelling work. 

So there's that, but we want to balance, again, to stay on a positive note. This doesn't define you. It becomes an aspect of what you went through, and there are professionals out there who can help you situate it as a part of who you are, not something that defines you. Even if you are living with the possibility of a familial diagnosis, hopefully it's far down the line and we may find ways of mitigating that.

But if we don't, what can we do to support you, in all your strengths and all your complexities? So that's how I have been just incredibly moved, and struck by the resilience of these children. Above all, their altruism and they all to a person, even the youngest said, “I want to help others. I didn't know about this. I had nowhere to go. There were no [support] groups, especially for me. Nobody was talking about this. I went once somewhere and it was about grandparents. It's not at all what's going on. And so I wanted to talk to you because if you can then tell other kids that other kids have gone through this and come out on the other side, then that is worth doing.”

LINDSAY: Yeah, you said it so beautifully. With that, I just want to thank you both, for this interview, for the work that you're doing, and the research you're doing on young onset dementia. It is a rare disease, and shedding light on these experiences is so important. Thank you for giving children and young adults the ability to discuss their experiences living with a parent with young onset dementia. It's hard and it needs to be talked about. I really appreciate it. 

SIKES: Thank you. 

GELMAN: Thank you. I just want to say it's an honor and a privilege to amplify their voices, and thank you. You are a perfect example of somebody who's resilient and adaptive and has maximized their experience in the service of others. So thank you for talking with us today, Lindsay.

Research from Dr. Sikes (in this folder)

  • The impact of parental young onset dementia on children and young people’s educational careers  - BERJ, the British Educational Research Journal, 2018

  • ‘It would be easier if she’d died’: young people with parents with dementia articulating inadmissible stories - Qualitative Health Research, 2017

  • From “What the Hell Is Going on?” to the “Mushy Middle Ground” to “Getting Used to a New Normal”: Young People’s Biographical Narratives Around Navigating Parental Dementia - Qualitative Health Research, 2018

  • How do young people ‘do’ family where there is a diagnosis of dementia? - Families, Relationships and Societies, 2016

  • ‘‘It was then that I thought ‘whaat? This is not my Dad’’: The implications of the ‘still the same person’ narrative for children and young people who have a parent with dementia -Dementia, 

  • ‘Every time I see him he’s the worst he’s ever been and the best he’ll ever be’: grief and sadness in children and young people who have a parent with dementia - Mortality, 2017

Resources related to raising kids in families with FAD 

Resources for Children from Without Warning, a support program for those living with younger onset Alzheimer's Disease from the Rush Alzheimer's Disease Center

Youngtimers

Supporting those impacted by familial Alzheimer’s disease with community, education and advocacy

PO Box 151035
San Rafael, CA, 94915

info@youngtimers.org