Kate Swaffer who was diagnosed with dementia over a decade ago, and before she was 50 sent me a link to a story she wrote Diagnosed with Dementia: What’s Next? wrote back in 2015. I hope that one sentence shares the many ways that even after a diagnosis, there are years, and even decades of productive life — she was diagnosed in 2008. See the bottom of this post for links to her books for purchase.
In the hopes of making this simple, I am going to summarize and layer in some thoughts from other readers, and the research, on things you can do to help drive your future. For several tasks, I hope you will collaborate with loved ones who will listen, support, and follow through on the plan you are working to create. Creating an action plan early can help you feel more control, and provide the tools to those around you to feel confident that they are doing what you want.
Ask your doctor(s) for and collect the following:
- Your diagnosis. You should get this information from the physician who made the diagnosis. What is it? What are some symptoms? What are effective symptom management techniques? What might you expect in 1 year, 5 years, 10 years? What changes might you expect and how might you address them?
- Clinical trial resources. Because so little is known and we don’t have a cure, would participation in a study offer benefits to you physically and emotionally?
- Referrals to local support groups, programs, and day-programs for engagement. Learn and ask your doctor(s) about staying engaged both physically and intellectually and it’s impact on brain health maintenance.
- Is there rehabilitation that would benefit you? From Occupational Therapy (OT), Physiotherapy, Speech pathology, Walking/mobility rehabilitation, Dietician, Psychologist, Social worker, Specialised fine motor skill rehabilitation, to counselling, including grief and loss as well as support groups.
Create your own care plan based on the recommendations and discuss with your loved ones:
- How to help. Make it clear to those around that it’s important they recognize you in meetings where your health, your assets, and your living choices are being discussed.
- What you like. Do you like walking? Playing games? Going to Yoga? What are some physical activities that you enjoy doing. If you stop driving, is there a way to help you maintain this activities?
- What do you want to be known about your diagnosis? If you are still working, how might you discuss and how do you continue in a job if you have noticed some of the symptoms of dementia are presenting in your personal and professional life?
- Who do you designate as your personal/financial and medical advocates. They may not be the same person. While many people designate a spouse, you need to have a plan B since the spouse could very-well predecease you. Sorry, I know that is a little grim. : <
- Would you be open to engaging in local classes, workshops, and programs knowing that exercise and engagement can help minimize your cognitive decline?
I found this site that can help you navigate a host of questions and issues related to Alzheimer’s, but it will help with other forms of dementia. I was surprised to find an action plan they offered that was for the caregiver … not the individual diagnosed. However, the toolkit may be a great way to have a conversation that is difficult to begin. You can do the General Assessment as a “guest” — just look in the bottom right corner of the page (see red arrow) for that option.
One of things Kate Swaffer has done is help advocate for the rights, and abilities, of those diagnosed with dementia. Now is a good time to understand what you can do to best advocate for your future. Encouraged.
What the Hell Happened to My Brain? by Kate Swaffer (Amazon)
What the Hell Happened to My Brain? by Kate Swaffer (Google)