Why should I care what this adult film star has to say about dementia?

Ok first things first — Seth Rogen is not, in fact, an adult film star. He's just an adult who stars in films. (And I'm actually a big fan.) I just used that title to attract clicks. (Is that wrong? Or maybe just smart? Either way I’m sorry for the misinformation. But we can all agree Pineapple Express is not kid content so maybe my clickbait stands justified!?) 

Last night I was scrolling through Instagram, distracting myself from anything real or meaningful as one is wont to do, and came across Hilarity for Charity's post about their new documentary.

(Hilarity for Charity is a nonprofit started by Lauren Miller Rogen and her husband Seth to raise awareness and funds re: Alzheimer's. Lauren’s mom, Adele, had early onset which made the couple invest their time and energy in the cause.)

The Instagram post was about their doc "Taking Care" which is now streaming. So of course — to further stave off the existential dread that creeps up on all of us in the nighttime hours — I immediately went to Apple TV (Apple TV Plus? Apple Movies? Apple TV Plus Movies?) and hit play. 

The doc is short — only 38 minutes — but within just a few seconds I simultaneously felt goosebumps (maybe from the cold can of soda in my hand) and a heartwarming sensation (definitely from the hot tea in my other hand... which I proceeded to spill down the front of my shirt). 

Anyway. As any dementia specialist/Roger Ebert wannabe would do, I got a notebook and jotted down some thoughts while watching.

What I liked:

1. I liked Lauren and Seth's relationship – they seem to have a genuine, strong partnership. We know caregiving can put a strain on marriages (just check the r/CaregiverSupport subreddit thread"How many people have had their marriages ruined by having to care for a parent?" if you don't believe me) but they seemed to care well for one another in the midst of Adele's decline. I especially liked Seth urging Lauren to go to therapy, because as we know: When you tend to your mental well-being, you can be a stronger and healthier care partner. (Good RX) But… 

   
   

2. Therapy costs MONEY, HONEY. Alzheimer's ain't cheap. So I really liked Lauren and Seth's blunt honesty that their money makes things easier (not easy, but easier). I appreciated their acknowledgement of their own privilege, and their confession that even with Hollywood-A-List-Comedy-Star money, caregiving is still incredibly difficult and pricey. The average total lifetime cost of care for a patient with dementia is roughly $415,936, nearly double that of patients receiving other types of care (American Action Forum) so again, I was glad to hear Lauren say straight-up: "The only thing that made it manageable is that we had money." 

Other things I liked: 

• Lauren's willingness to call her mom "Adele" instead of "Mom", which might've been harder for Lauren but made things easier for Adele. (Again: Reddit is a good source of interesting insight about this particular topic: when to start calling PLWD by first name rather than familial titles/kinship terms.)

  
  

• Zelda the dog getting credit for being a caretaker herself, supporting Lauren in such a challenging time. What would we do without our dogs!? (Read: Why Caregivers Should Have Pets)

• Lauren reading aloud to her mom. This is one of my favorite "Creative Engagement" activities with PLWD. (Just wait 'til I tell you about reading the Michelle Obama memoir to the ladies I volunteer with…) It's a great way to be together without relying on memory, conversation, cognition, etc.

  
  

• Hearing other comedians like Michael Che and Samuel L Jackson talk about their experience with dementia. 

  
  

What I wanted more of:

Nothing is perfect and of course the goal of this short piece was to share about the HFC nonprofit, not educate everyone on everything there ever is to know about dementia, but – 

In so much of the content I see about Alzheimer's, the focus is on prevention and/or a cure and/or a future without the disease. (Here the nice doctor with the luxury pool in the backyard talked about the Mediterranean diet and hope for new drugs.) But what's too often left out is recognition of the potential for a beautiful, full, challenging, meaningful, rich life WITHOUT those hoped-for-future-interventions. I wanted to know more about what still made Adele happy post-diagnosis: did she like to garden? To dance? She didn't have a miracle drug or a magic diet, but what did she have?

Yes, I hope for a cure and yes, I like to eat foods geared toward maintaining cognitive strength. But I also want to reiterate that there are and likely always will be folks living with cognitive impairment and we need tactics to help enrich the lives they're currently living.

Watch the documentary yourself or don't, but if you're someone caring for a loved one living with Alzheimer's DO visit their website to learn about their Caregiver Respite Program and online support groups.

So to answer the (admittedly misleading) question posed in this blog's title: Why should I care what this "adult film star" has to say about dementia? Why should we care what Seth and Lauren have to say? Because we need as many of these types of stories as possible: stories from people who are living with dementia (either as care partners or diagnosed individuals) giving a peek inside their lives. These folks with lived experience are the experts. Not the doctors or the bloggers or the authors or even the scientists — the Seths and Laurens and Adeles. And we need their voices, now more than ever.