The original intention of HFC was to use comedy to make younger people more aware of Alzheimer’s and to involve celebrities to remove the stigma.
The couple know intimately that brain disease of any kind is no laughing matter. Because of her family history of dementia, Lauren Miller Rogen had a full-body MRI scan a few years ago to see if there was anything that might be a cause for worry.It found a small brain aneurysm, which doctors monitored. When it began to grow, she had surgery to treat it, she revealed earlier this month, thanking the team who had guided her through the “scary experience” in a speech at the UCLA Department of Neurosurgery Visionary Ball in Los Angeles, California.
The Rogens’ charity has since grown into a larger organisation that provides in-home care grants for family members who are caring for Alzheimer’s or dementia sufferers.
HFC produces educational material aimed at younger people and gives cash prizes to high school and college students who have shared stories about coping with family members suffering from the disease.
Rogen even spoke at a US Senate hearing about Alzheimer’s research in 2014. Broadcast on the public service channel C-Span, it was one of the most watched programmes on the channel.
When Rogen mentioned the name of his film Knocked Up – slang for pregnant – hearing chairman Senator Tom Harkin made a wisecrack about it being the first time the phrase had ever been uttered during a Senate hearing.
Rogen and Miller Rogen had no special reason for choosing comedy to spread awareness about the debilitating effects of Alzheimer’s. At a presentation on the future of brain health at a summit organised by Boston-based healthcare-focused media group Stat, Rogen said they simply chose to do the thing they do best.
“Comedy is just what we do – it wasn’t a conscious decision to bring comedy into it,” said Rogen, the star of cheeky Hollywood film comedies like The Hangover. “It is the product that we make, the thing that we are passionate about, and creatively where our minds go. So a lot of things in our minds converge around comedy.
“Comedy does help the messaging, but a lot of the time we don’t try and disguise what we are trying to say with jokes. A lot of people are more inclined to watch a charity event if it’s seriously funny, and comedians are very charitable people who are willing to donate their time and energy,” he said.
The fact that few people of her own age knew anything about the disease – it was regarded as an ‘old persons’ disease and not talked about by her friends – was one of the motivators behind HFC, which aims to educate young people about Alzheimer’s and its effect on families.
Miller Rogen’s father was the primary carer for her mother for much of her illness. Although she says the family had the finances to cope, it was still not an easy time.
“My family really went through it, and we saw what carers have to go through, and that inspired us to start the charity,” she said.
Watching his mother-in-law suffer opened Seth Rogen’s eyes to the evils of the disease. “Not only did I not know about Alzheimer’s, I did not know about the whole process of dealing with an ageing parent or loved one,” he said.
“I didn’t know that someone who lives in the thrall of dementia needs 24-hour-a-day care, seven days a week.”
Rogen was also shocked by the financial burden of care. There is no national healthcare service in the United States, and private insurance companies won’t fund long-term care. So money becomes a big issue.
“If someone gets dementia and you’re in your twenties, there is no system to take care of them,” Rogen said. “You, the child will have to take care of them, and what happens if you’re not wealthy? You won’t be able to work, so no one in the family will be working – so where is the money coming from?”
The couple knew that the task of remedying a systemic failure of the US healthcare system was beyond their charity’s reach. So they decided to alleviate carers’ burdens in a direct way.
Anyone who’s had to care for a family member suffering from dementia or Alzheimer’s knows how difficult it can be to do simple things like get to the shops, let alone do something fun like taking a holiday, or going to a birthday party.
HFC’s In-Home Care Grants award “respite care hours” to successful applicants: the charity pays for a professional carer to come into the home for a period so that the family carer can take some time off.
HFC first awards 25 hours of in-home care to be used within three months to applicants in the US and Canada, where Rogen was born. After that, family carers can apply for a grant which gives them 25 hours a week of in-home care.
“That is a really impactful thing for carers,” said Miller Rogen. “They can get to the doctor’s, or the grocery store, and attend a friend’s dinner or a birthday party. I met a woman on a plane who was taking a weekend off for the first time in four years on one of our grants.”
The charity has funded around 400,000 hours of care so far and has been able to fund around 30 per cent of the applications.
Rogen and Miller Rogen are aware that a charity can only do so much, and that US government policies are needed to solve the problems.
“We need to put proper policies in place to help carers,” Miller Rogen said.
The Biden administration recently rolled out some new guidelines which proposed “administrators” to help carers negotiate any community funding that might be available, but that’s a long way from a European-style healthcare model.
Miller Rogen’s mother died from Alzheimer’s disease at the age of 68.
“I think she would have hoped that Lauren would not have to be doing what she’s doing, but she would be very proud of her,” Seth Rogen said.
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