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.
“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, 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/>.
“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>.
“Frye Art Museum | Seattle, WA | #AlwaysFREE.” Frye Art Museum. N.p., n.d. Web. 24 Oct. 2016. <http://fryemuseum.org/program/here_now>.
“Individuals with Dementia.” MoMA. N.p., n.d. Web. 24 Oct. 2016. <http://www.moma.org/learn/disabilities/dementia#course2>.
“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>.
Multimedia, By Ely. “Home.” American Association of Caregiving Youth. N.p., n.d. Web. 24 Oct. 2016. <https://www.aacy.org/>.
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>.
“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>.