Doing this is (as a very wise hospice doctor advised me not quite 6 years ago) like piloting the Memphis Belle. The plane gets shot up, your crew takes on unpredictable injuries, resources are consumed, difficulties mount. But you've got to pilot it to the best landing you can.
https://twitter.com/vincentdonofrio/status/1373011285676339202
When I learn of someone who is giving care to a person living with #dementia (#Alzheimers is but 1 of a 100+ causes) I tell them it's 1/3 caregiving skills, 1/3 the unique progression of the person living with dementia's illness & 1/3 luck. 2/3rds are not in a caregiver's control
What gets you through years or even decades of this? Curiosity, a willingness to learn, formulating theories or hypotheses, trial & error, flexibility, patience, resilience, some comfort with not being in control, a good sense of humor & sheer tenacity. And adjusting on the fly.
I was (& still am) a student of what is called person-centered care. The person living with dementia is at the center, to the extent he or she can, he or she is empowered to make decisions, but as this ability is lost, the primary caregiver substitutes his or her judgment but...
...keeping as the central goal 'what would person living with dementia have wanted to do in this situation?'. This often conflicts with what conventional medicine does other than palliative care & hospice care which are person centered. Dilemmas abound but individuality is key.
Sometimes the goal isn't doing everything medically possible, instead it's quality of life, or minimizing agitation & confusion & other distressing emotions, or helping the person living with dementia feel purposeful or useful & derive sone meaning to the extent its possible.
Quality of life usually takes precedence over quantity of life but there's room for a lot of individual preferences to be expressed & honored in how they are carried out. It can be a higher burden for a caregiver or better a team of caregivers to bear, but it's often more humane.
If I ran dementia care, a person who gets dementia diagnosis would immediately have the option of seeking palliative care which is a 'middle path' between conventional medicine & hospice. And health care professionals would better honor this middle way as well as any family input
The other thing about this approach to dementia care is it focuses on skills still present, these are exercised in order to preserve them for as long as possible. Occupational therapists, physical therapists, speech therapists, music therapists, art therapists, pet therapists...
...nutritionists, psychologists/psychiatrists & social workers are a bigger part of the care team & the ever changing care plan than doctors. There should also be specially dementia trained nurses like the UK's admiral nurses & similar certified nursing assistants as well as...
...better education & training for any family or other 'informal' (aka UNPAID) caregivers. I'm a big fan of @teepasnow @validationhelps & @theDAWNmethod to name 3 useful approaches to more humanistic dementia care. And knowing possible cause(s)of dementia is also key to custom...
...#dementia care. No 2 people are the same & every course of illness's progression is unique so there needs to be much more flexibility in providing best dementia care. Also chemical restraints are no substitute for well trained people, this is @alpower12's area of expertise...
...drugging a person living with #dementia to 'control' them is counter-productive, what really works best is for people providing care to radically adjust to the ever-changing world & realities of the person living with dementia. As most of the causes of dementia are chronic...
...meaning they can't be cured, they instead have to be managed, progressive, meaning illness worsens over time & ultimately terminal (if some other illness does not cause death, the disease(s) causing dementia will eventually be fatal), a medical approach isn't sustainable...
...& while debate on some finer points rages on, there are at a minimum 2 people dealing with dementia: the person with the diagnosis & the person most immediately caring for the person living with the dementia diagnosis. They don't have luxury of waiting for an ideal solution...
...so what really happens in a person-centered approach is that the person living with #dementia & the primary caregiver function as a dyad, a team. The cognitive / thinking part of managing increasingly falls to the caregiver, he/she has a lot of knowledge to learn, also many...
...practical skills. And remember this is 2 adults so anyone saying something like 'I am now parenting my parent/grandparent/elder/other adult' is in danger of infantilizing the person living with #dementia. If anything, what the caregiver does is provide ever more skills to a...
...person living with #dementia who is losing them. Like I said, this is really hard for any caregiver (paid/unpaid, professional/amateur, career/family/friend) to get his/her head around, to abandon those other models, but it's got a lot of rewards & preserves personhood of a...
...person living with dementia. And it's not necessarily on just one person to do 100% of this care for years or decades without end, but it takes 1 person to insist all others either follow this person-centric care model or bow out of providing care. It also takes changing...
...the behaviors & attitudes of the people providing care because a lot of the dementia care 'horror stories' are really misunderstandings on the part of those of us who are 'well' or as @teepasnow says 'have the bigger brains'. When you see it with fresh eyes, it all shifts &...
...becomes so much easier. Only once did I ever come close to being injured by my late father who had a type of illness FTD or fronto-temporal dementia where he might have physically hurt me & it was my fault, I was impatient, I knew better & I disregarded some of what I had...
...learned in favor of instinct but luckily I backed off, backtracked & de-escalated a situation in which I could have been struck (FTD has some 'challenging' behavioral components, but you can often learn to outwit many of them & not provoke a 'catastrophic meltdown' in many...
...cases, this requires knowledge & practical training, mine came from studying occupational therapist @teepasnow's methodologies. It's faster to push through, to pile on, to drug or otherwise restrain, but you destroy trust of & good relationship with the person living with...
...#dementia & it's catastrophic for both people. Anyway this looks & works differently than what care for other diseases looks like but it works & people providing care burn out less, feel less negative emotionally about a very difficult health situation. But it's not yet as...
...common as it should be. Which is a bigger tragedy than the illness itself. @teepasnow cites a frightening statistic: 4 out of 5 families facing #dementia will fracture or fall out over the care needed to be provided to a person living with #dementia. This is due to lack of...
...understanding, lack of skills, lack of good healthy communications between all family members. And this was all happening well before COVID-19 pandemic happened which complicates #dementia care even more. It can be different, but it might have to get worse before it gets...
...better. One thing we do know is a lot of people living with #dementia have been disproportionately infected with & died of COVID-19. But at least experts in elder care are seeing this as the catastrophe it is & there's an opportunity to finally fix caregiving permanently...
...I'll leave people with this opinion piece that @statnews published, how the lives of 6.2 million people in the USA living with #dementia & their 11 million #caregivers could see real improvements & not more marginalization & business as (abysmal) usual statnews.com/2021/03/19/wha…
Back when I was still caregiving (my father died in November of 2015) the projections seemed to say were were on track for basically 1 out of every 3 people living with a #dementia diagnosis, which means that the other 2 out of 3 would have to figure out how to deal with it...
...this tipping point was decades out but it was coming absent some kind of major event to change it. Perhaps a silver lining of COVID-19 is we fix dementia care sooner rather than later, that people living with #dementia & their #caregivers finally have their rights recognized.
But this is going to take a very big holistic approach to how we do health care, how we treat caregiving, how we pay for things, how we handle #ageism #ableism #sexism & #racism, how we do work & careers & child care. I hope we're up for it, but because I also know hope is not...
...a strategy, I also advocate & fight for changes because this cluster of diseases will take us down faster than climate charge & other crises will. 1 out of 3 Americans is 50+, there are 53 million unpaid caregivers for adults & elders, & they save US economy $1 TRILLION / year
10,000 baby boomers turn 65 each day, more people, especially people under 65 are diagnosed with dementia & the care costs are not going away.
We will have to see if we have it in us to meet this global challenge better than we met the global challenge of COVID-19.
We will have to see if we have it in us to meet this global challenge better than we met the global challenge of COVID-19.
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