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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Tag Archives: alzheimers

Early Diagnosis: Which Side Are You On?

26 Monday Aug 2013

Posted by Ann Napoletan in Advocacy and Awareness, Diagnosis, Early Onset, Research, Ruminations

≈ 8 Comments

Tags

alzheimers, alzheimers research, diagnosis

beach-footprintsOne of the more controversial subjects surrounding Alzheimer’s is whether or not it makes sense to push for early diagnosis. After all, this is a disease with no cure and no proven treatment, right? So, what good could come of knowing sooner than later?

Preclinical Diagnosis

A study recently published in the Annals of Neurology has found a link between the amount of mitochondrial DNA in one’s spinal fluid and the likelihood of developing Alzheimer’s. The research shows that asymptomatic patients as well as those already experiencing symptoms have lower levels of mitochondrial DNA, and perhaps most important is the fact that this can be detected up to 10 years before symptoms appear.

Professor Ramon Trullas, head of the study being conducted at CSIC Institute of Biomedical Research at Barcelona, explains that these findings could lead to viable treatment options in the preclinical stages – something that simply doesn’t exist today.

Younger Onset

The medical community believes that the sooner treatment begins, the more likely it is that symptoms can be controlled or delayed. Imagine receiving a younger onset diagnosis in your 40’s or 50’s. For those families, truly in the prime of their lives, a few years can make a significant difference not only in planning and preparation, but in the amount of quality time they have together.

Clinical Trials and Support

Early diagnosis also allows patients to enter clinical trials much sooner, giving researchers an opportunity to study the brain in the earliest stages of the disease. The hope is that this early research will lead to treatments that can halt Alzheimer’s long before symptoms begin to manifest themselves.

Another important aspect of early diagnosis is that it gives families a chance to engage meaningful support from the very beginning. I believe that alone can be immensely helpful. With my mom, one of our greatest mistakes was allowing denial to take over.

I remember well how defensive she was; I never wanted to rock the boat, so we didn’t talk about it.  Looking back, I think about how we could have handled things differently if we had faced reality at the first sign something was wrong. Building a support network would have been extremely beneficial.

More Questions Than Answers

At the end of the day, we all have to make our own choice. This is one of those situations where there’s really no right or wrong decision. Each of us is influenced by our own past experience, and although I had always been of the mind that I didn’t want to know, that changed as I watched my own mother slip away.

It will be interesting to see what happens over the next five years. Will insurance companies begin to cover PET scans and spinal taps to assist in the diagnosis of Alzheimer’s? If so, how many people will line up for the tests? Or will fear of becoming uninsurable force people to remain in the dark for as long as possible?

Lots of questions, not so many answers…  I suppose only time will tell.

I would love to hear your opinions. Leave a comment to weigh in on whether or not you think early diagnosis of Alzheimer’s makes sense.

 

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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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Tags

alzheimers, assisted living, dementia, long term care

Pat Summitt Foundation Guide

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!

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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

≈ 3 Comments

Tags

alzheimers, assisted living, dementia

week-in-reviewHaving 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.

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