Young Caregivers and Museums

Audiences Affected by Dementia

Many museums are aware of the increasing number of adults living with some form of dementia.  Thus, there has been a big push to increase programming for this audience.  For example, The Phillips Collection in DC collaborates with Iona Senior Services to offer Creative Aging, a program for those with memory loss (AAM).  Additionally, museums are also recognizing the benefits of intergenerational learning.  This means that museums are creating programs that aim to engage all members of a self-defined family.  Some museums are taking these ideas a step further and work to create intergenerational programming for participants with alzheimer’s.  Considering these ideas, can you think of anyone who’s missing?

Caregivers, and caregivers alone.

Programs that focus solely on caregivers are often missing in museums, however, this is not to say that they do not exist. The University of Michigan Matthaei Botanical Gardens and Nichols Arboretum has a program specifically for caregivers of persons living with memory loss; here, participants engage with each other in poetry readings, guest speakers, instruction in meditation and breathing techniques, and advice on creating a holiday stress-management plan.”() Still these programs are potentially leaving out a very vulnerable population: young caregivers.  

Young Caregivers

More than 1.3 million young people in the U.S. between the ages of 8 and 18 care for sick or disabled family members.” (NPR).  This is a population that museums tend to forget about; in fact, it’s a population often overlooked by many.

I had never heard of this population until I read about it in Libby Rhode’s “Museums, Meaning Making, and Memories: The Need for Museum Programs for People with Dementia and Their Caregivers”.  Here, Rhodes discusses the potential difficulties in creating museum programs for audiences with dementia.  Rhodes explains the benefits of engaging this population as well as their caregivers, such as improved physical and mental health, better use of coping mechanisms, and the significant postponement of  placing the person with dementia in a nursing home.   At the end of her article, Rhodes mentions young caregivers as an under-served group of museum attendees, noting the following as a possible reason for their neglect as a museum audience:

“All the major U.S. surveys of caregivers include only people age 18 and over, partly because 18 is the age at which respondents can consent for themselves and partly because it is the norm to think of children as requiring care, not providing it (Hunt, Levine, and Naiditch 2005, 1).”

Not only do many institutions not recognize this hidden population, many people do not realize that they have become a young caregiver until they are older.  Like myself, many young caregivers assume responsibilities, either willingly or begrudgingly as assigned, small or large, that will help their families function, or at least survive.  

The American Association of Young Caregivers

In looking further into the existence and needs of the young caregiver population, only one source truly comes forth: The American Association of Young Caregivers.  Created by Connie Sikowski, this organization recognizes the needs of young caregivers and provides them support in a variety of ways from the 6th grade through high school gradation.  Support is available in the form of academic assistance, counseling and coping mechanisms, group outings with peers, and necessary interventions with school officials.  

Why is important to focus on young caregivers?

 Caring for a loved one is a difficult task that can result in anxiety, depression, and unnecessary stress.  Such a situation can be worse for adolescents, and research is just starting to catch up to the consequences of, to any degree, taking care of another person as a young adult or teenager.  As CNN cites, 22% of high school dropouts in the United States leave school to care for a family member.  Additionally, children bear too much of the caregiving burden because they are worried about the status of their respective families.  

“Children are afraid to reach out because they don’t want to be taken away from the parent…It’s scary. And people don’t want to be near you when you have an illness, [which is why] it’s just as hard on the disabled parent as it is the child, to open up. That’s why it’s kept like under the table” (CNN).

To avoid this, young caregivers will put their families first, letting their performance and attendance in school drop.

What Can Museums Do?

As museums are discovering with audiences that suffer from dementia, some programming is really more about engaging than it is about learning (future of museums blog). This principle can be applied to programs specifically for young caregivers.  The idea behind these programs should be to utilize a community space, such as a museum, to help ‘reduce the negative effects – anxiety, depression, and feelings of isolation – that caregiving responsibilities can have on a child’s mental, physical, and emotional health” (CNN).  As many educational theorists have postulated, play or social interaction is imperative to the development of children and adolescents.  Many times, when children are at home taking care of a family member, they miss out on these opportunities (NPR); this is where museums can step in – to create a space for socialization letting young caregivers know that they are not alone.  

Additionally, young caregivers should be included in programs for visitors with dementia.  Yes, there are already programs for visitors with dementia and their “care partner”, but the term usually connotes a spouse or partner that is taking care of the affected visitor.  Terms need to be inclusive of all types of caregivers.  This is different, slightly, from intergenerational programming with visitors who suffer from dementia because, in my opinion, those programs may not always focus on the healing aspect and stresses of caregiving with the younger generations in those programs.  

Moving Forward

Moving forward, hopefully more research will be conducted in regards to young caregivers and their needs.  Until then, museums and other community organizations should work together to provide young caregivers the same attention they would to a caregiver of any other age, although, perhaps in a different manner.  

Sources and Further Reading

Berger, Danielle. “Help for a ‘hidden Population’ of Caregiving Kids.” CNN. Cable News Network, 17 May 2012. Web. 24 Oct. 2016. <http://www.cnn.com/2012/05/17/health/cnnheroes-siskowski-youth-caregivers/&gt;.

“For Visitors with Dementia and Their Care Partners.” The Metropolitan Museum of Art, I.e. The Met Museum. N.p., n.d. Web. 24 Oct. 2016. <http://www.metmuseum.org/events/programs/access/visitors-with-dementia-and-their-care-partners&gt;.

“Frye Art Museum | Seattle, WA | #AlwaysFREE.” Frye Art Museum. N.p., n.d. Web. 24 Oct. 2016. <http://fryemuseum.org/program/here_now&gt;.

“Individuals with Dementia.” MoMA. N.p., n.d. Web. 24 Oct. 2016. <http://www.moma.org/learn/disabilities/dementia#course2&gt;.

“Kids As Caregivers Face Special Challenges.” NPR. NPR, n.d. Web. 24 Oct. 2016. <http://www.npr.org/2012/10/23/163480255/kids-as-caregivers-face-special-challenges&gt;.

Multimedia, By Ely. “Home.” American Association of Caregiving Youth. N.p., n.d. Web. 24 Oct. 2016. <https://www.aacy.org/&gt;.

Museums On Call: How Museums Are Addressing Health Issues. N.p.: n.p., n.d. American Alliance of Museums. Web. <http://www.aam-us.org/docs/default-source/advocacy/museums-on-call.pdf?sfvrsn=8&gt;.

“Older Adults and Programming for People with Dementia.” Center for the Future of Museums:. N.p., 01 Jan. 1970. Web. 24 Oct. 2016. <http://futureofmuseums.blogspot.com/2015/06/older-adults-and-programming-for-people.html&gt;.

8 thoughts on “Young Caregivers and Museums

  1. zhuoweiliu

    Thanks for your presentation, provided a new perspective to introduce this neglected special group. Young caregiver is a both strange and familiar word to me. I have been focused on similar topics during my undergraduate study in China. I am totally agree with your point, “play or social interaction is imperative to the development of children and adolescents”. Additionally, I am pretty applaud museum as an member of community, provided “some programming is really more about engaging than it is about learning”. The museum should provide the opportunity and space, which are let young caregivers get equal treatment and respect.

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  2. Michelle

    Thank you for this input on this underrepresented audience. Both your post and your presentation really opened my eyes to an audience the public would recognize if they saw them, but never put them in their on category. There is so much added responsibility to the younger population these days. Not only do they have to worry about school, but some go to work, care for siblings, and care for elderly family as well. It is difficult to reach out to an audience that in some senses don’t want to be found, in fear of losing their family. The intergenerational programming could be so beneficial, more museum should research their successes. I also would if museums could partner with school counselors. Counselors would know their students well enough to assist with a development of program that could leave a lasting impression with this audience.

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  3. tenebristic

    I do so appreciate that you focused on this topic; this isn’t something that was on my radar at all. Your talk and post have given me a lot to think about in terms of recognising and engaging with people units who come into the museum. The programs that I’ve assisted with have happened on weekday mornings or early afternoon. Granted, most of the people who came were groups from care facilities, but they were open to individuals and their caretakers. I didn’t even think about young people who are primary caregivers not being able to participate in these sessions. This corresponds with Ruth’s point that interactives are great for everyone, the objects used to teach about the artifacts and art projects would be highly engaging for these younger caregivers.

    Thanks!

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  4. klvholmes

    The more I think about people coming into museums, the more I believe that every museum should have someone from the care-giving medical field on staff to train and assist with programming. As change agents in museums we need to advocate for openness and understanding for varying types of visitors. I agree that programs solely for young care givers would be great, possibly in congruence with a program for the person needing care. Maybe a group painting or seated yoga in the museum could provide each group something to engage with while in a museum. Art therapy is helping many people cope with varying stresses. Thank you for highlighting this group of museum visitors. I now wonder how we could market a program to this group of visitors.

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  5. ninasgraham

    Juliana,
    Thank you so much for this new and diverse perspective on who a caregiver actually may be. You have brought light to the idea that caregivers can be more than a spouse or mature adult, they can be our very own youth. And despite the programs already set in place to promote inclusivity amongst museums and these relationships, not all programs target this specific age group of caregivers. Specifically, you discussed the need for programs to target younger caregivers who may understand certain healing aspects and experience the same stresses. These programs that help to relieve some of these anxieties, should be offered to every caregiver, not to just the mature or spousal ones.

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  6. katebreichert

    Thank you for highlighting such an overlooked population in you post and presentation; to be honest, I had never considered this audience in my role as a museum educator, and I am grateful that you brought it to our attention! I think what is so fascinating about audience studies and these sorts of conversations is that, for me, it always comes highlights above all the importance of compassion in our profession. As you mentioned in your presentation, the individual experiences for these youth caregivers is going to be so incredibly unique and may be nearly invisible to the museum. And while awareness by itself is not going to change the museum world for this audience, I think being prepared with more knowledge of the sorts of emotions and stressors that these youth might be experiencing can help us begin to open up a better space for them in our institutions.

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  7. Danielle

    Thank you so much for teaching me more about this audience. While I knew that young caregivers existed, I had never really thought about how large and affected this audience is. Living regular life is often difficult and often going to a museum is just not an option. As you mentioned, programs that are aimed at young caregivers need to be inclusive of everyone and specifically marketing to this population would not necessarily be effective. I agree that more research should be done in regards to if museums are engaging this audience and how we can do better.

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  8. museumpeople

    Thanks so much for choosing this audience. I think many of us knew peripherally about this audience, child caregivers rarely are the focus of museum programs and really should and could be. Museums, parks, and cultural institutions have much to offer this audience. Thanks for bringing them to our attention.

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