Alzheimer’s Association Trial Match – Smilecast 73

Alzheimer’s Association Trial Match

Every 70 seconds someone in America develops Alzheimer’s. In 2050, experts project there will be nearly one million new cases annually.

The Alzheimer’s Association has developed TrialMatch, a confidential interactive tool that provides comprehensive clinical trial information and an individualized trial-matching service for people with Alzheimer’s disease and related dementias.

The web-based patient and clinical trial matching service is also accessible via a toll-free telephone number: 800-272-3900.

Participants create a TrialMatch profile. The Association compares your unique profile to its comprehensive, up-to-date clinical trial database. With patient’s permission, a Contact Center specialist contacts people with unbiased trial result options and trial site contact information.

Homebound Seniors Twice as Likely to Develop Alzheimer’s – Smilecast 72

Homebound Seniors More at Risk for Dementia

Homebound seniors are twice as likely to develop Alzheimer’s disease as more active individuals.

Investigators at Rush University Medical Center in Chicago followed 1,294 seniors from two separate studies. None of the study subjects exhibited dementia symptoms at the beginning of either study.

During an average of 4.4 years, 180 participants developed Alzheimer’s. Of this group, patients who self-reported that they never left their home environments during an average week were two times as likely to develop Alzheimer’s than those who periodically traveled out of town.

 

HOW TO BE A SUCCESSFUL LONG-DISTANCE CAREGIVER

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The Challenges of Being a Long-Distance Caregiver

(from Sixty and Me)

I had the distinct pleasure of interviewing Amy Goyer, family caregiver expert for AARP, as part of our virtual Caregiver Smile Summit. We spoke about long-distance caregiving and being a
long distance caregiver. 

Amy has been a caregiver for her grandparents and for her parents so she knows the long-distance caregiving space well. She cares for her father who has Alzheimer’s. And while she lives with him, she travels a lot for her work.

A big concern for her is the idea of not knowing what’s going on when the caregiver is not present and the emotional toll that takes on people. A lot of long-distance caregivers also have caregiver’s guilt.

Research indicates that long-distance caregivers actually spend more money than other caregivers. Travel expenses, paying for in-home caregivers, etc. attribute to some of those.

I’m well acquainted with the latter reason. When my mom lived in Florida, and before she moved to North Carolina to be with me, my wife and I paid for her to live in a condo that we bought.

My sister was five minutes away and looked after her, but we took the financial hit. That way we could, as I say, “separate the combatants” – those being my sister and my mother. They fought like cats and dogs the short time mom lived with my sister when she initially moved to Florida.

Making the Most of Visits

Some long-distance caregivers only get to visit during holidays and get a wakeup call! When you do get a chance to visit, Amy encourages people to get a good hold of what is going on.

Look at the living situation. Is it safe? What is their support system? What is their overall quality of life – not just their health, but their wellbeing in general? Do they have a social life? Are they managing their finances or are you seeing signs of neglect, fraud or abuse?

In-person visits are essential, and if you are not there, you need to make sure you have people in place who become your eyes and ears.

Hire When Needed

Aging Life Care Specialists (they used to be called Geriatric Care Managers) can manage a situation for you if no one is in place locally.

They can assess the situation, monitor the situation, align services, shop and advocate for the person. An in-home care professional often can help. Area Agencies on Aging (in the U.S.) can also come out and do an assessment on a loved-one’s situation.

There Is a Lot You Can Do from a Distance

  • You can manage mom and dad’s finances. Technology makes that easy.
  • You can make doctor’s appointments.
  • You can research medical issues and treatments.
  • You can purchase supplies and have them sent to the house like supplements and vitamins.
  • You can even do grocery shopping long-distance and order meals.
  • Call mom and dad every day. It can make their day and change their mood.

Amy says you have to be creative. Just because you are not there does not mean you cannot contribute. You can.

Use Technology to Make Life Easier

You can monitor a loved-one with video cameras. You can install motion sensors that can detect falls and inactivity. You can monitor medication compliance. These can be set up so you receive alerts.

Amy particularly likes all of the emerging home safety technologies. You can have digital locks on the door where you can allow the home helper in when they get here. Cameras allow you to check and make sure it’s the person who is supposed to be there.

Heck, my wife and I set up special codes for trusted vendors to allow themselves in the house during certain times. The “I’ve Fallen and Can’t Get Up” buttons have become more sophisticated. Some have GPS built in so you can know at all times where mom and dad are.

Telemedicine capabilities allow you to monitor mom or dad’s vital signs. There are all kinds of apps, too. Search for them by keywords like caregiving.

Obviously, before you embark on this you want to make sure mom and dad are cool with it. There is a fine line between intrusion and helping!

Build a Support System for Your Loved One

A support system is vital when you can’t be there. Amy first sends people to the Area Agency on Aging in their locale. While that is a U.S. phenomenon, readers no doubt have aging services agencies run by government entities locally.

An assessment from that type of agency can prepare you for what you need to do first. Often it starts with one thing, like making sure mom and dad are eating well. Services like Meals on Wheels could be vital extensions of your care team.

You can be guided to adult day services, home care agencies, chore services, etc. Find volunteer and non-profit organizations locally that can help. If mom or dad served as a veteran, often there are many services available, in addition to funding!

Faith-based organizations also can offer support. Our local Catholic church started a day program at the parish, totally free. Of course, neighbors can be a great resource to help with chores as well. You should pay them but you may find that they will do it for free.

It’s a bonus that neighbors can keep an eye on mom and dad too. Even the postman can be your eyes and ears if they see mail and newspaper piling up!

While the context of this article is about mom or dad living at home, you still have to be just as vigilant if mom or dad are in a care facility.


Want to learn much more to make your caregiving journey easier? Register for the Caregiver Smile Summit today!

Long Distance Caregiving – From Charlotte Today

Long Distance Caregiving

Research indicates that long distance caregiving actually costs more money. Travel expenses, paying for in-home caregivers, etc. attribute to some of those.

I’m well acquainted with the latter reason. When my mom lived in Florida, and before she moved to North Carolina to be with me, my wife and I paid for her to live in a condo that we bought.

While the context of this podcast is about mom or dad living at home, you still have to be just as vigilant if mom or dad are in a care facility.

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