Why I Walk – Tim Roche

 

21994342_1584751974908630_6069983682174470303_o

Why do I walk? I walk for a lot of reasons. I walk for my grandma that was diagnosed
with Alzheimer’s four years ago. I walk for my grandfather whose health deteriorated from the stress of seeing his wife forget who he was. I walk for my mom who is the most incredible caregiver and woman that I know, and who shows me every day what it means to truly love and care for someone. Most of all, I walk for hope. I know the struggle of seeing how Alzheimer’s affects not only the person with the disease, but all of the people who love them. It’s not easy and I know that there are millions of other people just like me who have faced the same struggle. The Walks to End Alzheimer’s are so much more than just a Walk. They are symbols of hope and support for every person affected by the disease. If you have ever been to a Walk, IMG_2140.JPGyou know how incredible it is to see tons of people coming together to support a common cause. It really is a beautiful event and touches everyone who walks, volunteers or is involved. I walk because if other young people my age who are the future see how much I care, maybe they will too. That’s why I walk.

Why do you?

#WhyIwalk #Walk2Endalz #ENDALZ

Advertisements

Get Social with Us at the Walk to End Alzheimer’s!

The Walk to End Alzheimer’s season in Central and North Florida starts Saturday, September 23. We are so excited to see everyone’s purple and hear your stories as we fight for Alzheimer’s first survivor!

Help us raise Alzheimer’s awareness even further by sharing your Walk day with us on social.

takeaction-2

Tell your story.

Social media makes it easy to let the world know you’re committed to the fight against Alzheimer’s. Share why you’re walking to inspire others to join your team and donate toward your fundraising goal.

Time it right.

Once you’re registered as a participant, get the word out by sharing your personal participant page through Facebook, Twitter, LinkedIn and Instagram. Use social media to update friends and family on your fundraising progress, share photos from Walk day and thank donors for their support.

Add hashtags.Social Hashtags

Hashtags make it easy for the entire social community to rally around a cause. Use #Walk2EndAlz and #ENDALZ in your posts and with your photos to create awareness of your participation. Search these hashtags to join a larger conversation with other participants and the Alzheimer’s community.

Easy tips:

• Download our Facebook app.
Schedule your posts leading up to the event, use a Walk cover photo, share your fundraising progress and more with this easy-to-use app.

• Tweet for support.
Tweet your personal URL and ask others to “Donate now,” “Join my team” or “Share this!” Make sure to include the hashtags #ENDALZ and #Walk2EndAlz.

• Tap into your professional network.
Share your reason for ending Alzheimer’s and your fundraising goal on LinkedIn, and ask contacts and colleagues for their support.

• Show and tell.
Use Instagram to tell your story — your reason to end Alzheimer’s — with a photo. Don’t forget to use hashtags #ENDALZ and #Walk2EndAlz.

• Use your best manners.
Thank your donors publicly using social media. Include a link to your Walk participant page in your message so others can donate.

• Follow us.
Follow our Chapter on Facebook (facebook.com/AlzCNEFL), Twitter (@alz_cnfl) and Instagram (@alzcnfl) to get the latest event news, read about fellow participants and enter giveaways.

• Check in on Walk day.
Use Facebook to share your Walk-day experience and inspire last-minute donations.

• Select our Snapchat Geofilter.Social Snap
Select our custom Snapchat geofilters at Walk. Be sure your location services are on and swipe until you see it. Be sure to share it to “Your Story”.

 

Sample Posts

Not sure where to start? Raising awareness and funds through social media is as easy as copying and pasting the messages below. Don’t forget to add a link to your personal fundraising page and to upload photos that tell your story.

Facebook/LinkedIn/Instagram

  • I Walk to End Alzheimer’s for the more than 5 million Americans living with the disease. Follow my footsteps and join my team today! [Link to personal Walk page] #ENDALZ #Walk2EndAlz
  • I am walking to end Alzheimer’s for my [grandma, grandpa, brother, sister, the future]. Please donate to my team today. Together we can end Alzheimer’s! #ENDALZ #Walk2EndAlz [Link to your Walk page and upload photo of the person you’re walking for]
  • We’re walking to end Alzheimer’s on [date]. Join [team name] or donate to help us ght Alzheimer’s. [Link to personal Walk page] #ENDALZ #Walk2EndAlz
  • I am at [insert percentage] of my fundraising goal for Walk to End Alzheimer’s! Please donate and help me reach 100 percent. [Link to personal Walk page] #ENDALZ #Walk2EndAlz
  • I beat my fundraising goal for Walk to End Alzheimer’s! THANK YOU. Alzheimer’s disease is all around us, but the power to stop it is within us. #ENDALZ #Walk2EndAlz [Include photo from Walk]
  • I walked to end Alzheimer’s today! Thank you to everyone who donated and cheered me on. Together we can end Alzheimer’s. #ENDALZ #Walk2EndAlz [Include photo from Walk]

    Twitter

  • 5 million+ Americans are living with Alzheimer’s. This is why I #Walk2EndAlz. Join my team! #ENDALZ [Link to personal Walk page + photo of who you are walking with or for]
  • I am walking to end Alzheimer’s for my [grandma, grandpa, brother, sister, the future]. Donate 2 [team name] & help #ENDALZ [Add photo of the person you are walking for and link to your Walk page]
  • We’re participating in the #Walk2EndAlz on [date]. Join our team or donate 2 help #ENDALZ. [Link to personal Walk page + photo of who you are walking with or for]
  • I’m at [insert percentage] of my fundraising goal for #Walk2EndAlz! Please donate & help me reach 100% [Link to personal Walk page + photo of who you are walking with or for] #ENDALZ
  • I beat my fundraising goal for Walk to End Alzheimer’s! THANK YOU. Together we can #ENDALZ. #Walk2EndAlz [Add photo from Walk]
  • I’m at the #Walk2EndAlz, walking for my [grandma, grandpa, brother, sister, the future]! You can still donate toward my fundraising goal. Help #ENDALZ! [Link to personal Walk page + photo of you at Walk]
  • I walked to end Alzheimer’s today! Thank you to everyone who donated. [Add photo from Walk] #ENDALZ #Walk2EndAlz

An Insider’s Look at Alzheimer’s Research Trials

Clinical trials to find more effective medication are crucial to ending Alzheimer’s disease.  Research over the last decade has focused on medications that can slow or reverse the brain damage caused by Alzheimer’s rather than just treating the symptoms. More clinical trial volunteers are needed now so that the research can be completed quicker.  Participating in an Alzheimer’s study can be an interesting and positive experience. The study coordinator plays a large role in that experience. Pat Riddle, CCRC, has been a Renstar Medical Research study coordinator working on Alzheimer’s clinical trials for over 10 years. Pat offers a personal and unique perspective on working with Alzheimer’s clinical trial patients.

You have been involved in Alzheimer’s research for over a decade. What positive changes have you seen in research during this time?

Pat Riddle: There have been no new medications developed to treat AD since 2003 and this is sad and unacceptable.  The positive change now is that there is an awareness of the magnitude of this disease and there has finally been an emphasis on the development of new treatments and allocation of funds to do this.  Also, the medications that are currently approved for treating AD only temporarily help memory and thinking problems but our current pipeline of promising new treatments deals with the underlying cause of AD and offers hope that they can conquer this disease and stop Alzheimer’s disease.  There is also a greater emphasis on the importance of early detection which can often begin with a memory evaluation done by a trained, certified professional.  I do several memory evaluations each week, at no cost to the patient, and these evaluations can be very helpful in determining if there is significant memory impairment.

What is it like working daily with individuals living with mild cognitive impairment and Alzheimer’s disease and their caregivers?  

PR: Working with patients with mild cognitive impairment and Alzheimer’s disease and their families runs the full gamut of emotions. Offering them involvement in research provides purpose and hope for all of us.   We start and end our visits with our patients and families with a hug and this is the best part of our day.

Being a caregiver of someone living with Alzheimer’s is often difficult and frustrating. What advice would you give to their family and friends to help support the caregiver?

PR: The best advice I can offer that will help caregivers is to REALLY BE THERE FOR THEM and stay involved.  Be there to listen and also give your time to help.  This is 24/7 with no escape for caregivers.  Just sitting with patients to allow the caregiver some down time away helps.  Also be there to listen and provide support. Stay a part of their lives.  I have heard so many times that “our friends don’t come around anymore.”  Tell everyone not to stay away because you feel sad or don’t know what to say.  Just come and be with them….they need your time and support.

Can you describe some of the positive experiences you have had while dealing with mild cognitive impairment and Alzheimer’s patients? 

PR: We work with many patients who have been in our clinical trials for several years.  Seeing some of these patients maintain their quality of life and independence is the reason we come to work every day and do what we do.  To see some of our patients living their lives to the fullest and enjoying their retirement years, I cannot express how overjoyed I am to see this and be a part of their lives.  

Renter Medical Research is a proud to be

The Presenting Sponsor of the Ocala Walk to End Alzheimer’s.

Walk Community Partner Exeuent Slide

Why I Walk – Neil Flynn

IMG_3289 (1)I had multi-colored purple (i like to call it lavender) highlights put in my hair in honor of my parents, both of whom have been afflicted with dementia. Purple is the trademark color of Alzheimer’s and their annual Walk is 10/14. Any time my testosterone level dropped when thinking about having the coloring done, all I had to do was think about how this cruel disease has wrecked havoc on two non-deserving people. My Mom is 94 years old. Tomorrow, she won’t remember today. For over five years my Dad progressively worsened until he had to be institutionalized, for his safety and the safety of others. He hated every minute of every day and always wanted out. He IMG_3287wanted out so bad, he pulled the fire alarm, knowing confusion would entail and he’d have a better chance at escaping. Another time, as I was going up the elevator to visit him, the elevator door opened and there he was with his walker ready to escape. I lovingly said, “Get your a_s back in there.” I miss him more now than ever.

RiverView Senior Resort – Follow Our Lead at this Year’s Walk to End Alzheimer’s

RiverView Senior Resort chose to become the Presenting Sponsor of the 2017 Walk to End Alzheimer’s in Brevard for a number of reasons. First and foremost, we work with and care for residents with varying degrees of Alzheimer’s Disease or other forms of 15111080_572669036254141_2983148413124286605_odementia. It touches our lives every day. It also breaks our hearts to see people you care about slowly succumb to the disease. Second, we believe in the Alzheimer’s Association’s work to advance the care, support and research to find the cure.

At RiverView, we have stepped up to do our part to end Alzheimer’s – one of the fastest growing diseases in the United States. As Alzheimer’s disease is the sixth-leading cause of death in the United States, we want to help build awareness of the disease and what each of us can do to help. One in three of our residents die with Alzheimer’s or another dementia. Our investment and commitment to the mission of the Alzheimer’s Association demonstrates our passion about finding a cure for this terrible disease. As this year’s presenting sponsor, we are aggressively reaching goals we have set to make a difference through this wonderful event.

img_1663.jpg

In our own facility, we do everything we can to help our residents with memory loss to live a rich and fulfilling life at RiverView. Our Heartfelt Connections™ Memory Care Program is built on the belief that, with memory loss, what remains is far more important than what is lost. So our highly trained, competent, and compassionate staff captures each resident’s unique life story—a legacy of lasting details about each resident’s family, friends, career, hobbies, likes, and dislikes. Memories fade, but past relationships and experiences continue to shape residents’ lives each and every day.

We invite everyone to visit our large tent at the entrance of the 2017 Walk to End Alzheimer’s – Space Coast on Saturday, September 23, 2017. Join us and 75 other teams who are “walking the walk” for a cause that can benefit everybody in one way or another. Together, we can take the steps necessary to end Alzheimer’s once and for all.

We invite you to join our Walk team. Just stop by RiverView Senior Resort to learn more and tour our facilities while you are here. Surrounded by Florida’s Intracoastal, our assisted living is located in Palm Bay and features aging-in-place with nurses on onsite 24/7, fine dining served any time throughout the day, our wellness program and stunning views of the Indian River.  Residents have multiple options of private studio or one-bedroom apartments and can enjoy fishing off our pier, relaxing in our billiards and card room or watching manatees and dolphins from the heated outdoor pool.

RiverView Senior Resort – proud Presenting Sponsor of the 2017 Walk to End Alzheimer’s – Space Coast.

3490 Gran Ave. NE
Palm Bay, FL 32905

RiverViewSeniorResort.com

(321) 312-4555

Assisted Living Facility License #12862

 

Walk Community Partner Exeuent Slide Space Coast.jpg

Why I Walk – by Jeanne Pope

“It is hard to write this blog entry.  Alzheimer’s Disease has affected so many people in my life. Two of the most important women in my life were my mother and my mother-in-law.  I watched as these two loving and vibrant women had their lives shattered by Alzheimer’s.

As a caregiver, I know the hardships and the blessings that come with spending the last of my mother-in-law’s life with her. Wyatt and I wanted to give this gift of care to her. Needless to say, we want to see a cure for this terrible thief of the vibrancy, of the personality, of the relationships we had with our mothers.

Please join us for the Tallahassee Walk to End Alzheimer’s on October 14, 2017. We appreciate any and all support you can give to this great cause.”

-Jeanne Pope of Pope’s Pines

Walk Community Partner Exeuent Slide.jpg

Tips for Traveling

5 Travel Tips for Alzheimer’s Caregivers

Traveling with your loved one stricken with Alzheimer’s disease doesn’t necessarily have to be a thing of the past after diagnosis. The key to ensuring more quality leisure time with your loved while creating precious memories along the way comes with simple preparation, planning and safety. Employing this following guide will ensure an enjoyable and relaxing trip for everybody.

1: Be Realistic

It is important to think about how far advanced in the disease your loved may be. Are they still able to travel far from home, or is a simple day trip to a closer destination more reasonable? To what degree of physical mobility do they still have? Whatever will bring about the most pleasure possible is the main point to consider by a caregiver.

2: Be Safe

An Alzheimer’s patient who may find themselves in unfamiliar surroundings has a higher risk of wandering and getting lost. It is always a good idea to make sure that your loved one is with yourself or someone whom they’re familiar with at all times

3: Be Strategic 

Consider the time of day in which your loved one is at their best, and schedule your time of departure (car ride, air travel) during those hours. This prevents confusion and agitation that can arise when leaving home or where you’re staying.

4: Be a Communicator 

Providing a detailed itinerary to emergency contacts is the best way for others to keep tabs on you and your loved one, especially if your loved one is traveling alone. Notifying hotel and airline staff that the person you’re traveling with has Alzheimer’s disease is another good idea to ensure any helpful or necessary accommodation during your trip.

5: Be Prepared 

Aside from the necessities of remembering to bring along your loved one’s medications, it is also important to keep comfort items on-hand such as blankets, pillows, or their favorite coat in case he or she becomes anxious at some point while traveling. Keeping to a schedule and leaving for your destination within a reasonable amount of time reduces the stress experienced by your loved one that may come around in a case of rushing to catch your flight or dinner reservation.

Tips for Family Celebrations

4 Tips for Family Celebrations with an Alzheimer’s Loved One 

2016_CareAndSupportShoot_Chicago_DayTwo_131.JPGAttending family events and milestone celebrations is the cornerstone to maintaining a certain quality of life beneficial to a loved one experiencing Alzheimer’s disease. Of course, the disease does bring about changes in how one needs to engage and interact with the patient. Ensuring a stable and stress-free environment is important and able to be accomplished by the following helpful information.

Familiarize Guests 

As there may have been some considerable time since your family members last saw your loved one with Alzheimer’s, it is important to consider any significant changes that they may witness in them that are common to the condition. In doing so, communicate with these members ahead of time to explain what they may notice and what to do in certain situations. For example, let them know that, when being greeted by the loved one, he or she should stay calm if they touch their face instead of verbalizing anything.

Adjust Expectations 

2016_CareAndSupportShoot_Chicago_DayOne_218

Some planned activities for a particular get-together may be overwhelming for your loved one with Alzheimer’s. It may come to be too physically or mentally challenging for them, or there may simply be too many people present for comfort. Eliminating a few activities while choosing to keep some is helpful, while ensuring a smaller, more intimate event may be in their best interest as well.

 

alzblog2

Involve Your Loved One 

Including your loved one and making them feel like a vital part to any activity is always a good idea. This may involve having them help with food preparation, or having them socialize with the guests. Whatever they’re passionate about, focus on that.

Make Traditions Portable 

The need to make some changes to established traditions may come with the challenges associated with having a loved one who has Alzheimer’s disease. However, there can still be a possibility of a memorable and valuable experience for everybody. If they are in a nursing home or cannot leave the house, bring the celebration to them and allow for them to be in the most comfortable situation possible.

Alzheimer’s Caregivers: Data from the Behavioral Risk Factor Surveillance System (BRFSS)

The Big Picture:

In 2013, 15.5 million family members and friends provided 17.7 billion hours in unpaid care to individuals with Alzheimer’s and other dementias – care valued at over $220 billion.

Source: 2014 Alzheimer’s Disease Facts and Figures.

Alzheimer’s and dementia caregiving requires more time and lasts longer.

  • On average, caregivers for individuals with Alzheimer’s and other dementias spend 23 hours per week providing care – and one in six spends 40 hours or more per week. This is longer than the average 16 hours per week spent by caregivers of those with other conditions.
  • More than one-fifth of Alzheimer’s and dementia caregivers has been providing care for longer than five years, and 70 percent have been providing care for more than one year.

Alzheimer’s and dementia caregiving is more personal and intrusive.

  • Nearly 28 percent of those with Alzheimer’s and dementia need the most help with matters of “self care” – getting dressed, taking a shower and going to the bathroom, for example. That is true for just 16.2 percent of those with other conditions.
  • Another 29.6 percent of those with Alzheimer’s and other dementias need the most help with household tasks.

 

 

2014_BRFSS_Caregiving_Data

Alzheimer’s and dementia caregiving takes a heavy toll on the physical and emotional health of caregivers.

  • Those who care for someone with Alzheimer’s or another dementia are 3.5 times more likely than caregivers of people with other conditions to say that the greatest difficulty associated with caregiving is that it creates or aggravates their own health problems.
  • For 31 percent of Alzheimer’s and dementia caregivers, stress is the biggest problem with caregiving, compared with 23.7 percent of caregivers for those with other conditions.
  • While 37 percent of caregivers for those without Alzheimer’s and other dementias reported no difficulty associated with caregiving, only 20.7 percent of Alzheimer’s and dementia caregivers reported no difficulty.

With Alzheimer’s and other dementias, it is mostly women caring for women – and many are also caring for children.

  • Of all people aged 60 and older receiving care, 10.7 percent have Alzheimer’s and other dementias – more than for any other condition except heart disease
  • Of those caring for someone with Alzheimer’s or another dementia, 65.4 percent are women.
  • Similarly, 65.7 percent of those with Alzheimer’s and other dementias who are receiving unpaid care from a family member or friend are women.
  • Half of Alzheimer’s and dementia caregivers are between the ages of 45 and 64.
  • More than one-third of Alzheimer’s and dementia caregivers also have a minor child in the home. 2014_BRFSS_Caregiving_Data 2

A Note about Comparisons:

In this survey data, 98 percent of care recipients with Alzheimer’s and other dementias were aged 65 and older; for care recipients with all other conditions, just 58 percent were aged 65 and older. Therefore, for comparison purposes, data for caregivers of those with conditions other than Alzheimer’s and dementia were limited to those caring for someone aged 60 and older.

Behavioral Risk Factor Surveillance System (BRFSS): 

The data presented here come from the Behavioral Risk Factor Surveillance System (BRFSS) Caregiver Module, which was used in 2009 and 2010 by eight states (Connecticut, Illinois, Louisiana, New Hampshire, New Jersey, New York, Ohio and Tennessee) and the District of Columbia. The data have been weighted and aggregated across both years and all states. The BRFSS is a public health survey conducted each year by all states in coordination with the Centers for Disease Control and Prevention (CDC). The survey collects information on the prevalence of disease, health risk factors, preventive health behaviors and health care access. The Caregiver Module is an optional set of 10 questions that asks about health problems of the care recipient, his or her care needs, and the impact of caregiving on daily living.

Cognitive Data from the 2015 BRFSS

One in nine Americans aged 45 and older are experiencing confusion or memory loss that is happening more often or is getting worse, but 56 percent have not talked to a health care professional about their worsening memory problems, according to data from the 2015 BRFSS survey in 33 states and D.C.

What is the BRFSS?

The Behavioral Risk Factor Surveillance System (BRFSS) is a public health survey conducted each year by all states, in coordination with the Centers for Disease Control and Prevention (CDC).

The data presented here come from the 2015 BRFSS Cognitive Module – a series of six questions that ask about memory problems, the burden of cognitive decline, and whether memory problems have been discussed with a health care professional. All data were analyzed by the CDC’s Healthy Aging Program.

One in nine people aged 45 and older report facing confusion or memory loss that is happening more often or is getting worse (“subjective cognitive decline”).

  • Data from 33 states and the District of Columbia show that 11.6 percent of Americans aged 45 and over have subjective cognitive decline.
  • African Americans are 21 percent more likely than whites to have subjective cognitive decline. fact-sheet-cog-data-2015BRFSS 2
  • Individuals with lower levels of education are more likely to have subjective cognitive decline. Of those who did not graduate from high school, 18.6 percent have subjective cognitive decline compared with 7.4 percent of college graduates.
  • Among those with subjective cognitive decline, 29.2 percent live alone, and 24.2 percent have a household income of less than $15,000.

People with subjective cognitive decline often have additional health issues beyond their increasing memory problems. 

  • Eighty percent of those with subjective cognitive decline have at least one other chronic condition (arthritis, asthma, cancer, cardiovascular disease, COPD, and/or diabetes).
  • Over half say that, in general, they are in fair or poor health.
  • Of those individuals with subjective cognitive decline, 39.4 percent spent at least 14 days in the last month in poor physical health.

 

For a large proportion of those with subjective cognitive decline, it negatively affects their ability to function.

  • Due to their memory problems, over 40 percent of adults aged 45 and older with subjective cognitive decline report they had to give up day-to-day activities such as cooking, cleaning, or paying bills. And, 35.7 percent say the needed fact-sheet-cog-data-2015BRFSSassistance because of their memory problems.
  • More than one in three adults say their worsening memory problems interfered with their ability to work, volunteer, or engage socially.
  • Taken together, over half of adults with subjective cognitive decline say that it creates “functional difficulties” – that is, their memory problems disrupt everyday tasks or interfere with work or social activities.

 

Most are not talking about their memory problems with a health care professional.fact-sheet-cog-data-2015BRFSS

  • Of those aged 45 and older with subjective cognitive decline, over half have not talked to a health care provider about it.
  • Even among those whose memory problems are creating functional difficulties, 42.3 percent have not talked to a health care provider.

What Is “Subjective Cognitive Decline”?

“Subjective cognitive decline” refers to those who report that, in the previous 12 months, they have experienced confusion or memory loss that is happening more often or is getting worse. While some of these individuals may have mild cognitive impairment (MCI) or be in the early stages of Alzheimer’s disease and other dementias, “subjective cognitive decline” does not measure the prevalence of any medical condition. Rather, it measures the prevalence of those who self-report they are having increasing memory problems. A growing body of evidence shows that subjective cognitive decline is one of the earliest warning signs of Alzheimer’s and other dementias and indicates a higher risk of developing the disease.

This fact sheet is supported by Cooperative Agreement #NU58DP0016115 from the Centers for Disease Control and Prevention (CDC). Its contents are solely the responsibility of the Alzheimer’s Association and do not necessarily represent the official views of the CDC.