I asked my newsletter readers to “tell me the one thing you seriously wish professionals knew–something that would make your loved one’s life better (or yours), or make it easier for you to deal with us [professionals].”

Having been on both sides (angry family member blasting professional; professional being blasted), I’ve long suspected the root of negative interaction has more to do with the emotional impact of watching dementia unfold in a person you love, versus flat-out awful care. (Although flat-out awful care is, unfortunately, a thing that exists.)

Sometimes it’s really about the laundry service; most often it’s not. Always, it’s about the fear of the unknown, the uncertainty of the future, frustration with the situation, and the heartbreak of watching a person you love struggle in a way no one should have to struggle.

My readers, some of whom are also professionals, shared their thoughts:

“Just because they [people with cognitive impairment] score high on tests does not mean they are capable of performing daily living tasks.”

I’m not certain of the situation for this reader, or to which tests she’s referring, but I sense she’s not getting the help and support she needs to make day-to-day life more manageable.

Feel free to share Dementia & (Loss of) Independence with your PCP and other professionals who don’t seem to be connecting with what you’re saying; it includes a link to the Lawton IADL Scale, which is very useful for figuring what support is necessary right now.

It’s important for families to understand that not many professionals specialize in dementia. Yesterday, I got a text from a (great) nurse with 20 years’ experience. She wanted to know the difference between Alzheimer’s and dementia and the ‘why’ behind increased sleeping.

“We raise the [quality] of care when we provide education for those who provide care.”

AMEN! But as I noted above, this doesn’t always happen. There’s a mandated-minimum of dementia-related education per year, but do you think 4 hours across 12 months is going to have a big impact? Me, either.

Not all providers are created equal. The respondent above, for example, works for a company that highly values education. They provide monthly training to both their caregivers and families, and it’s not generic fluff.

It’s perfectly okay for you to insist professionals working with your loved actually know what they’re doing, ie, not only know best practices in caring for people living with dementia, but also use them.

 

Some families crave precise answers that we (professionals) just can’t give.

“Look into the future and know what to expect and be prepared for, and when.” We can certainly give broad answers: slow and steady disease progression (usually), lasting from 8-20 years (mostly), (sometimes) with behavioral challenges….

When you’ve met one person living with dementia, you’ve met ONE person living with dementia is a truism because they’re people first and foremost. We can no more accurately predict what will happen than if we said all 10 year-old girls will have pretty much the same life up through age 30. We know there are some experiences they’ll share, by virtue of being female.

But then we also look at home environment, neighborhood, friends, school system, level of education, mentoring, occupation, choices about when/if to marry and have children, and so forth. And we can take two girls who have all the same attributes in each of these categories and still turn out to have dramatically different lives. Because no two people or lives are the same.

And so it is with people living with dementia.

“I wish my loved one had no confusion and was able to have a better memory. I believe those things are the worst.”

Yep. This speaks to the empathy and compassion professionals must have in order to successfully work with families (and people living with dementia). Run far away from a professional who doesn’t get this–and show it.

Here’s the thing: ‘guiding you through rough terrain’ is my tagline and my vocation. It’s my job, but it’s your life. You’re living this 24/7, and I need to always have that at the front of my mind. Or, as another respondent put it, “I wish that professionals would truly realize that love, respect, and patience will always win.”

Please only work with professionals who understand that–you’re in a tough enough situation without adding a goober who doesn’t get it to the mix.

“Family dynamics are complicated.”

This answer encapsulates how emotional the situation is, whether this is true of your family circumstance or not–and why professionals should know we’re always taking care of the whole family, never only the person living with dementia. This respondent is a retired executive director:

“Family dynamics are complicated. Just because we think a particular resident is the cutest, sweetest, and funniest person and we’d love to have as our parent/grandparent, they may have been an entirely different person when they were young and raising their family.

We have no idea what physical, mental or emotional abuse may have taken place and that it takes all an adult child has just to come in and check on that parent.  Showing love and giving hugs may be far more than they can handle.  

We can’t judge any situation.  It’s our job to support not only the resident but the entire family who may all be having a hard time dealing with the nightmare of dementia.”

The former executive director gained this insight from a family member who was kind enough to offer education on the situation. The executive director started making sure that other professionals understood that, too.

When we know better, we do better. As professionals, we often look to family to teach us how to do better. So please keep speaking up. You’re making a difference.

Christy Turner is the founder of DementiaSherpa.com (CTC Dementia Care Management) and has enjoyed the privilege of working with over 1,045 people living with dementia and their families. Follow on Facebook, Google+, Instagram, Periscope, Pinterest, Twitter, and YouTube. Content varies daily across platforms.