If I was in charge of dementia...
Updated: Jan 4, 2021
... things would be looking a lot different 'round here.
For one, I'd insist on a crown, a lot of sycophants bowing in my presence, and two hot dogs, with ketchup, mustard, and raw sweet onions slathered all over 'em, followed by a three-scoop banana split delivered to me for lunch everyday.
And after lunch I'd toss all the prostrated bootlickers out of my palatial dementia office and get to work.
My official portrait that I shall have commissioned on my first day.
So, if I was in charge of dementia from start to finish the journey would go a little something like this...
My first reign of fire would scorch the healthcare industry - never again would a dementia diagnosis bomb be dropped with no information and support immediately available. If there is ever a time to hit the ground running in life it's when a person is first diagnosed with dementia, when decisions can still be made, battle plans can be laid, troops can be mustered.
Doctors would be trained on counseling HOPE when giving their patient the diagnosis. HOPE for a future that's definitely got horror looming on the horizon, but also love, laughter, and joy in the life still to be lead.
I would command doctors not to sugarcoat the diagnosis - there's no denying love and laughter are tough to access (especially in later-stages), and joy, that fickle vixen, has pretty much left the building by then - but when a diagnosis is being handed down it will be straight talk balanced with HOPE that there will be precious moments to savor in every stage of this difficult journey.
Before leaving the appointment the newly diagnosed would be armed with info on free classes in the general course of the disease for themselves and their family and friends. Classes on how to live dementia life to the fullest, how to prepare for the worst, what you can expect from the first 2 - 4 years, 4 - 8 years, etc., how to be a care partner in the beginning, then transition to a care giver throughout the progression, how to manage those roughest of the rough behaviors with caregiver-based approaches and helpful meds.
These classes would be available in-person or online, and classes could be accessed at any point in the journey - either on the heels of a diagnosis or years later when the need for specific solutions is urgent.
Also upon diagnosis the dementia person's care team would automatically expand to include a social worker who is trained in the challenges dementia folks and their loved ones face and can immediately provide resources in the community such as:
Therapist who specialize in counseling dementia journeys for the people living with dementia and those who have chosen to care for them.
Elder law attorneys
Online and local community support groups for the dementia person and their care partners/caregivers
Early and mid-stage group activities in their area (dementia choirs, art appreciation courses, memory cafes, etc.)
City, county, or state caregiver financial assistance programs if available
Respite care and in-home care options in their community.
Memory care options with info on how best to research and assess a facility to ensure a good fit for lifestyle and financial considerations.
Finally a geriatric psych doctor would round out the dementia person's care team. As they transition into the later stages their geri psych doctor would be the go-to for assistance with helpful medications to curb the rougher dementia manifestations that may develop.
After I finished whipping the healthcare industry into shape, I would wave my Scepter of Subjugation, hand Stigma a shovel, and tell it to dig its own grave, freeing the dementia person from shame and family and friends from their dread of Death by Dementia in hopes that we could do away with the wasted time of hiding and denying it, and get to the part of truly living with it.
Then I'd wrap up the day by organizing meaningful work and volunteer opportunities for dementia folks, door-to-door public transportation readily available (so giving up driving might be less challenging), a nationwide workforce of high-quality, free in-home respite care for middle-class and low income families, and pet monkeys for all family caregivers so their dementia person would seem like an absolute breeze in comparison... in short, I'd make sweeping proclamations all centered on keeping dementia people engaged and active for as long as they are able, and reducing the emotional and physical stress, as well as financial burden, on their caregiving loved ones.
After that I'd drink of bottle of celebratory wine then take a "nap."
The next day (after lunch, of course), I'd follow the previous day's stellar performance with the decree that family caregivers from this moment forward will be paid a decent living wage for their work. I think about 3 million dollars a day oughta do it.
I was at the appointment when Mom received her diagnosis: Cognitive Impairment, transitioning into Dementia. Mom's physician slapped a couple of prescriptions in our hands and sent us out the door.
I would have killed for the woman to offer a bevy of resources, or at least hints on where to start looking, but instead, like so many other families we were left to fend for ourselves, overwhelmed, confused, despairing.
Every iota of aid that has abetted us on this journey we've found ourselves - Googling, YouTube videos, calling government agencies - one lead leading to another lead leading to someone who finally has an answer, a support option, a forum, a blog that provided desperately needed guidance and answers.
So when I'M IN CHARGE OF DEMENTIA my reign will give people tools from the outset to wrap their heads around the diagnosis faster, get their grieving over quicker, and get down to the business of living life with dementia, not living dead.
If you were in charge of dementia what would you do?
(Please don't take away the pet monkey.)
P.S. There's a bunch of states offering great support to family caregivers, such as Oregon who funds free online and in-person caregiver training at Oregon Care Partners, and Wisconsin Family Caregiver Support Program that provides respite/household services, caregiving counseling, and a host of additional caregiver help. Check out 2018's 10 Best States for Family Caregivers from Caring.com to see if there are support programs in your state you may be missing out on. And if your state didn't make the cut in the article call your state's agency on aging to find out what type of caregiver assistance/education may be available.