A friend of mine, Paul, was diagnosed with frontemporal dementia this fall.

Let me tell you a little bit about Paul. He’s a smart guy. He has a master’s degree. He is in his mid 60’s and retired a couple of years ago.

He was at the doctor for what he thought was likely depression. He had found that in recent months he had become apathetic–toward pretty much everyone and everything.

He wanted to be sad that his brother had cancer, but he really wasn’t. He thought he’d be devastated when his dog died, but he felt relief that he wouldn’t have to pay for dog food any more. And he didn’t care if he ate or showered. Some days he didn’t even brush his teeth.

While many people with this type of dementia don’t recognize their own apathy, Paul found it strange. When his brother died and he couldn’t feel empathy for his brother’s wife or kids, he went to the doctor.

He thought he’d be referred to a psychiatrist, but he was sent to a neurologist. His doctor didn’t mention dementia when he sent him to the neurologist. He figured the neurologist was going to prescribe an anti-depressant.

It took 4 months to get in to see the neurologist. The neurologist came in for less than 4 minutes and said he was ordering some imaging. It took over a month to get in for the imaging. There was also some insurance snafu somewhere in the process.

After the imaging, he waited a few more weeks before seeing the neurologist again. The neurologist said he had frontotemporal dementia. Paul said the doctor was in the room longer this time, perhaps 7-8 minutes. A sympathetic nurse patted his shoulder as he left the office.

Paul, who has never married, went to all of these appointments alone. He wasn’t given any resources to read. He wasn’t referred to a social worker. He was told he had frontotemporal dementia and sent home.

He didn’t know who to tell. He told me in an email. He gave me permission to write this blog post (as long as I didn’t call him by his real name).

I asked who else he had told. He told me no one, but he did plan to tell his sister-in-law. He just didn’t know exactly what to tell her because he didn’t know much about frontotemporal dementia.

He said he didn’t want to Google it (and I can’t blame him). He was scared he’d get information that was frightening and didn’t know if he’d be able to face it. He also wasn’t sure where to get reliable information.

I answered a few questions in an email. I told him that his diagnosis was terminal and gave him some numbers of life expectancy while reminding him that those were stats based on thousands of people. He was an individual and his progress would be unique. I was resentful that I was the one who had to deliver this news.

When he left the neurologist after diagnosis, they guided him in making a follow-up appointment that was six months in the future. However, he felt lost after walking out of the office and called them the next day. He asked for an appointment in the next few weeks so he could ask some questions. He was told there were no appointments available.

I wish the story of his diagnosis were uncommon. I wish it was rare that someone would have a poor experience through the diagnostic process. But it’s not.

It’s a story I hear a lot.

I wish health care providers had more time to sit down with individuals and families during the diagnostic process. I wish people living with dementia and their loved ones could get their questions answered in their provider’s office. I wish they could easily schedule follow up appointments. I talk to too many people who tell me that their experiences have been disappointing, at best.

My dementia simulation team and I have started producing folders for health care professionals to give to those who have been diagnosed with a type of dementia. Getting health care professionals to actually give them out has been more challenging than it should be.

We want to connect with individuals and families after diagnosis to tell them about our own support group and other support groups in our area, to give them referrals for counseling, and to let them know about potential other resources that are available.

I am sad that the need is so urgent.

We have to do better.

And, I do mean “we.”

I used to spend a lot of time thinking about how other people should do better…but in recent years I’ve realized that I am included in the people who should do better. My students and I strive constantly to work with health care providers to give individuals and families a better experience in diagnosis. We know the problem is systemic rather than something for which we should blame individual providers.

Sometimes I feel like we are making progress.

But I continue to hear stories like this.

We are working on it.

I have a group of graduate and undergraduate students who are committed to supporting families impacted by dementia. They are enthusiastic, smart, and passionate about what we do.

I fully believe they will get out into the field and improve experiences for those living with dementia and their loved ones.

But it’s a long road.

We try projects and programs. Sometimes they work, and sometimes they flop.

We will keep going. We don’t have unlimited money, and we don’t have unlimited time, but we are investing what we’ve got into this effort.

Empathy. Education. Empowerment.