PBS Next Avenue

18 Wednesday Sep 2013

Posted by Ann Napoletan in A Place for Mom, Alzheimers.net, Blogging, Care Options

Tags

assisted living, dementia, dementia village, Hogewey

My friends at A Place for Mom and I are very excited to share a compilation piece recently published by PBS Next Avenue.

Welcome to ‘Dementia Village’ is based on several of our articles regarding a unique dementia care community located in Holland.

At Hogewey, residents have the freedom to roam about without restriction. They can visit with friends, shop for groceries, stop by a cafe for lunch, or just relax by the pond and enjoy a sunny afternoon. Nurses and caregivers, dressed in street clothes, are there to provide 24×7 care; however, the environment is far from “clinical.”

Sound interesting? You can read more in the PBS Next Avenue article, which can be found here.

Guide to Evaluating Residential Dementia Care

22 Thursday Aug 2013

Posted by Ann Napoletan in A Place for Mom, Caregivers, Caregivers.com, Emeritus, Finding a Facility, Helpful Resources, Mom, Pat Summitt, The Early Years, Tips

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alzheimers, assisted living, dementia, long term care

Kudos to the Pat Summitt Foundation for putting together this free 50+ page publication on evaluating long-term care options.

Extracting my head from the sand

Long-term care decisions are among the most difficult you will ever face, and unfortunately it’s often a “baptism by fire” situation. That was certainly the case for us; my mom had been in the hospital and I’ll never forget standing in the hallway, numb, as the OT, PT, and social worker told me she couldn’t go home. Living independently was no longer an option.

I shouldn’t have been caught off guard, but I was. Oh yes, I knew in my heart the day was coming, but I had buried my head deeply in the sand on the vast beach of denial. I didn’t know a darn thing about long-term care. Nothing.

So, with one week to find a facility and get Mom moved in, I dove in head first armed with — not much of anything. I had enlisted assistance from A Place For Mom, which helped immensely, but oh how I wish I’d had the Pat Summitt Foundation guide. This was all uncharted territory for me, and I learned as I went.

Business is business

While it would be lovely if everyone had their heart in the right place, the bottom line is – well, the bottom line. It comes down to dollars and cents, sales, and monthly numbers. All too often, the focus is on keeping the building full regardless of whether or not the facility can provide adequate care to meet the needs of potential residents.

In fact, a recent Frontline exposé on Emeritus Senior Living points out that facilities sometimes even seek out advanced dementia cases. Why? Well, those residents require a higher level of care, which equates to a higher monthly payment. And after all, it IS all about the bottom line, isn’t it? The facility may not be equipped or staffed to handle the care, but somehow that becomes secondary to filling the building.

Asking the right questions

This is why it’s so very important to know exactly what to look for – and what to ask – when you’re evaluating options. The Summitt Foundation guide is divided into five chapters:

Dementia care options and services
Publicly available information about quality of care
Who to interview and what to ask
The value of observation
Strategies for being the best advocate you can be + list of additional resources

In addition, the e-booklet provides valuable interview guides specific to staffing, satisfaction surveys, chronic pain screening, and food service, as well as a worksheet for documenting observations. These comprehensive tools also include scoring guides and rationale to help you quantify your findings.

Eyes wide open

My nuggets of advice for families embarking on this journey:

Don’t wait until the last minute; start early so you’re somewhat prepared when the time comes.
Ask tons of questions and observe, observe, observe while you’re in the building.
Make unannounced visits at various times of the day/evening.
Talk to current residents and family members.
Listen to your gut – it will rarely lead you astray. If your instincts tell you something doesn’t feel right, trust yourself.
Download How to Evaluate the Quality of Residential Care for Persons With Dementia, by Sandra F. Simmons, Ph.D., John F. Schnelle, Ph.D., and Anna N. Rahman, Ph.D., and put it to good use!

Week in Review…

10 Saturday Aug 2013

Posted by Ann Napoletan in Alzheimers.net, Blogging, Care Options, Caregivers, Caregivers.com, Emeritus, Helpful Resources, Mom, Neglect and Abuse, The Early Years, Tips

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Tags

alzheimers, assisted living, dementia

week-in-review Having spent the last two days in bed slathered with Vicks and sleeping in a Nyquil-induced haze, I’m starting to feel human again. What a miserable couple of days it’s been.

I guess I feel like I’ve been a little out of sorts since the Frontline piece on Emeritus aired; it brought back memories I’d rather forget. And yes, years later, I’m still so angry at myself for trusting the staff at Outlook Manor the way I did. How I hope Mom knows I did the best I could at the time with the knowledge I had. There are no second chances in matters like this, but the opportunity remains to educate people so they won’t make the same mistakes… at least that’s something.

What in the World is Dementiaville?

This week on Alzheimer.net, I did a piece about Hogewey Village (aka Dementiaville) in the Netherlands. How wonderful it would be to imagine that someday, care like this could be available all over the world. Right now, the biggest barrier to adoption is one we’re all too familiar with – cost. It took a cool $25 million-plus to build Hogewey, not to mention the astronomical cost of running it.

Still, it’s not something we should immediately dismiss as impossible. Perhaps there are aspects of this model that can be repeated on a less grand, but still effective, scale. The current model in the U.S. is in large part not working, and it’s our responsibility to figure out how best to take care of those who took care of us for so many years.

Dementia Dogs

Monday’s Caregivers post introduced readers to Kaspa and Oscar. These two dogs from Scotland have been specially trained to provide assistance to dementia patients, and the results have been overwhelmingly positive. In addition to helping with prompts, reminders, companionship, and exercise, they also have a knack for sensing when a period of agitation is coming on, and they can often redirect their owner before things escalate.

Is It Time to Consider Assisted Living?

Also this week, I did a post on Caregivers calling out 8 signs that may indicate it’s time to start thinking about assisted living. Making that decision is one of the most gut wrenching things we’ll ever face, and when the time comes, it’s much easier to stick your head in the sand than face reality. Ask me how I know…

I hope that perhaps this list will allow you to step back and evaluate things a bit more objectively. The decision is extremely personal, and no two families or situations are the same.

Until You’ve Walked in Their Shoes….

Last but not least, this week I’ve seen several extremely harsh comments concerning placement in assisted living. I want to stress that, for a variety of reasons, not everyone is able to take care of loved ones at home. I find it terribly unfair to suggest that placing a spouse or parent in a care facility means they are loved any less. That is simply ludicrous. We must all do what’s best in our own situations.

Bottom line, never judge another until you’ve walked in their shoes. Although I do believe the system very much broken, there are without question some wonderful facilities that provide loving, compassionate care. Planning ahead is the best way to ensure adequate time for the due diligence necessary to find the right option for your family.