Since my time as a dementia caregiver, I have been looking for the “big picture” of caregiving. I went to graduate school, read reports, and compared many kinds of data, all to contextualize my experience to academic settings and share what I learned with the next generation(s) of caregivers. Below are my five key lessons learned from a caregiver perspective.
1. Caregivers are Isolated.
Over 16 million people care for someone with dementia, yet most caregivers feel alone facing the experience. People in our lives may not understand the demands we face. Our wellness, communities, and careers may be compromised as a result. Dementia caregivers seldom do a very good job connecting with each other, despite proven benefits from support groups, memory cafes, and other community programs.
Solution: Many local, state and national organizations (nonprofit and governmental) have programs designed to educate, support, and rejuvenate caregivers at the community level. This website has free retreats that feature your well-being, as well as a resource page by location. To find more resources, search the Internet for some combination of:
your location (country/county/city)
dementia [or other relevant condition]
caregiving
2. Academic Research is Disconnected.
There is a lot of research on dementia caregiving. Most care studies are developed by and for professionals. Caregivers are looking for action items. Studies tend to be on what physicians need to know, which community and technological interventions have been tested, or how caregiving can affect employers. Alternatively, there are care theorists, scholars who reflect on "care" as a broad ethical or political stance rather than contextually lived scenarios. Still, their work connects care to motherhood far more often than to the support of sick, elderly, or disabled persons. Imperfectly though it may be, motherhood is at least debated as a typical life phase, but the same cannot be said for caregiving. What is currently missing from the research: how to delegate responsibilities and get the family more involved, how to adapt our mindset to the erratic temporality of our loved ones, and how to keep some time and energy for ourselves.
Solution: There are numerous research initiatives working to develop better medicines, diagnostic methods, and prevention tactics. They are essential and necessary. Pass those emails and fundraising letters to your family and friends when they ask, "Is there anything I can do?"
3. People with dementia are finding their voice.
Not every person with dementia needs a high level of care, especially in the early- to mid-stages. When we look too far into our loved one's prognosis, we risk infringing on their liberty, even if their independence is partial or precarious. People with dementia are finding their voice, so I recommend this book out of Australia, written by a graduate student diagnosed with early-onset dementia at 49.
Solutions:
Whenever possible, preserve and celebrate our loved one's autonomy. Try to keep in mind what the person with dementia would have wanted when they were well and compare it against their desires now. Do they want the same things? Are they reasonable desires, in that they are not exhausting your time, energy, or money, and especially that they are not inviting danger?
Listen to people with dementia talk about their own experiences. Read up on perspectives that describe dementia as a disability of time or memory. Attend and boost dementia events that feature speakers who have dementia. You may find, along the way, you gain understanding and patience for your own loved one.
4. Media Resources Are Growing.
Newspapers are rife with articles fretting about how hard it is to be a caregiver and how much worse it will get. Unless the article covers a new project that you think would help you, you can probably skip those. You have to look to spot the whispers of caregiving stories throughout media and entertainment. Shows and films that feature an inter-generational household often include caregiving plot lines or subtext. If any of these stories warm your heart and help you feel seen, dig in because they're boosting your resilience. Tread carefully through anything that is going to make your care journey feel heavier than it already does. Don't read too far ahead of what you're currently going through in those dense dementia care books focusing on behavioral issues. That could be "borrowing trouble."
Solution: Only you can determine what is best for your circumstances. Use discernment in what actually helps and what just makes you feel more overwhelmed. We carefully vet our blogs, resources and activities for our caregivers. Does the site you found have resources linked and come from authoritative or well-known sources.
5. There are systemic reasons for all of this.
Caregiving is, in many ways, the opposite of what our society is set up for: it's not about making money or starting a family or having something fun to do on the weekends -- instead, it's expensive, isolating, and dutiful. Caregiving may be the least competitive, lowest cost/benefit, most altruistic project you ever take on, and as such, we have to learn not to judge ourselves by workplace standards.
Solution: Acknowledge your efforts. The vast majority of caregivers are doing our best and learning as we go. Learning something new doesn't mean there's been anything wrong with our devotion.
Now that we have the Internet to help us connect to better resources and one another, it's time to use it to deepen the connections. Join me for future entries, where I'll tap into my social science resources, compare notes with my nonprofit colleagues, and discuss information from my support groups. Together, we can compile our "collage" story made by and for dementia caregivers.
Leave a comment below about what's overwhelming, what you'd like help navigating, or what's working well!
About the Author:
G.J. Hodson is a social researcher and former dementia caregiver. After five years caring solo for a beloved grandfather, G.J. enrolled in graduate school to research isolation and inequality for caregivers, graduating into a pandemic with a Master's in Sociology and a certificate in Multicultural Women's and Gender Studies.
G.J. has been a volunteer for the Caregivers of Dementia Wellness Retreats and other organizations since 2017, facilitates two DFW support groups for dementia caregivers, and recently began freelancing as a care coach.
For more info about G.J.'s work and service, please check out the blog "Theories of Care".