Many resources are available if you have been diagnosed with dementia or related disease or if you are the caregiver for a dementia patient. These resources can help you in this moment, when you may be feeling overwhelmed, confused, and angry.
When a loved one's brain starts to unravel, it can really throw you through a loop.
Here was a person you relied on for sage advice and it seems as if the next minute, they've become childlike.
And it is also the day you realize you are now the adult in the family.
Learn about the stages
First off, educate yourself on the different stages of the diseases. This will help you from feeling overwhelmed, confused, and angry. It may also make you feel too connected with your own mortality and make you wonder if the same is in store for you.
There are many resources available to help you.
Covering all of Alaska, the Alzheimer's Resource Alaska is the primary nonprofit organization providing support, education, and care coordination for individuals and families affected by Alzheimer's and related dementias. It offers:
Free memory screenings and consultations: Early detection support and confidential individual consultations.
Care coordination: Assistance navigating care options, Medicaid waivers, and long-term support services.
Educational classes and training: Programs like Caregiving 101, Savvy Caregiver (stress-reduction and skills training), and Mind Aerobics.
Support groups and social activities: Local and virtual support groups, the Forget Me Not Chorus, and memory cafés.
There's more help
The State of Alaska Department of health's Dementia Education and Prevention Program partners with the Alaska Dementia Action Collaborative to:
Teach people you can age with a healthy brain
Promote healthy changes to lower the risk of dementia
Improve timely screening and early diagnosis
Provide resources for patients and their caregivers
The Workout to Go activity book is a guide to help Alaska adults stay physically active to improve their strength, balance, and flexibility, as well as prevent falls. It is available in four languages.
Again, fall prevention is key to avoiding dementia. Please don't think that a walker makes you look weak; think of it as life support.
I swear I get heart palpitations when I see an older couple walking down the sidewalk and one is using the sides of a building for support or leaning on their partner. If you go down, you take your partner with you.
What to do
For sufferers of both dementia and Alzheimer's, the best atmosphere is peaceful.
If you do leave the TV on, please no news stations as they only cause anxiety and no cartoons either. Try going to YouTube and typing in 1940s children's movies for happy and easy-to-follow entertainment.
Nothing with jump cuts or loud sounds. Musicals like "Meet Me in Saint Louis" or "The Sound of Music" are best.
Most television news tends to be loud and alarming. You want the patient to be calmed, not excited as they tend to become highly anxious.
I took care of one Alzheimer's client whose husband had her in front of Fox News and she was very agitated. He also did not secure the doors, so when I turned my back in the kitchen, I heard the sound of a door closing.
Sure enough, she was skipping down the street and heading to the beach with me waddling after her. We had a calming walk on the beach, so if you are near a wooded path or a beach, a walk in nature will be very healthy and give them a more restful sleep.
Or have them in front of the window with bird feeders outside to watch while the radio plays classical music.
Remember my former admonition: "We were not born to die in front of a TV."
Do not argue with dementia or Alzheimer's patients when they say something nonsensical or ask a question that you can't answer. You can say, "That's a good question, I'll ask the doctor." This removes any back and forth or arguing because they will forget the question very quickly. They may ask it again, but reply the same.
My father, when he had vascular dementia brought on by heart problems from hypertension after World War II, would say, "I don't mind being demented, I just don't like the word."
Suggested reading and viewing
Essential caregiving guides and practical manuals:
"The 36-Hour Day" by Nancy L. Rabins and Peter V. Rabins; comprehensive family guide covering everyday challenges and medical aspects.
"Creating Moments of Joy Along the Alzheimer's Journey" by Jolene Brackey; focuses on positive connection and shifting expectations.
"Learning to Speak Alzheimer's" by Joanne Koenig Coste; teaches a habilitation approach adapting to the patient's perspective.
"When Reasoning No Longer Works" by Angeliki Lagopoulos and Marcia Moran; offers communication strategies that move past logic and arguing.
"On Pluto: Inside the Mind of Alzheimer's" by Greg O'Brien; chronicles cognitive decline from the perspective of an affected journalist.
"Still Alice" by Lisa Genova; portrays the experience of early-onset Alzheimer's.
And my favorite movies on the topic include "The Notebook" and "Away from Her."
Dimitra Lavrakas worked as a home health aide. She is sharing lessons from what she observed in that role.
