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 

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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.

 

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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.

 

 

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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.

“My Alzheimer’s Voice” ~ Sewing her story of grit, one seed stitch at a time . . .

Carol Poole is a competitive, award-winning textile artist who recently submitted a design that is now headed to New York City to compete as a finalist in the 11th Annual Quilting Alliance Contest. At just 62 years old, she was diagnosed with Alzheimer’s, so she chose her beloved quilt-making pastime to tell the world what it’s like to face down a disease that still has no prevention, treatment or cure. “I’m a visual person and I can see what I want to articulate. As I crafted this quilt in my mind and drew a sketch of it, I called upon my past professional career of advertising; it’s all visual,” she says. “What I love about quilting is that I can imagine the concept in my mind, but the actual process of creating the work is meditative. My hands know exactly what to do – it’s muscle memory. Now, with Alzheimer’s, it takes me a little longer to formulate my thoughts, so quilting helps me slow everything down. I don’t have to worry if I’m saying the right things, or if I forgot the words. My hands always know the movements.”

Carol’s “My Alzheimer’s Voice” art quilt is 16” by 16”. It is made with hand-dyed silk batiks using silk batting. She describesFullSizeR001002 it as a bit “intense” for most people. “Folks who like more traditional imagery for quilts, will be challenged to understand why I burned holes in the fabric, sometimes pin pricks and other times larger, to depict the holes in my memories from Alzheimer’s,” she says.

The vibrant textile also has an array of dazzling colors that all pass through a “vortex” in the middle of the quilt and become slightly darker on the other side. “The swirling and concentrated motion of the colors as they pass through the vortex represents how my voice and memories changed with this disease, “ says Carol. “I singed pieces of the fabric with a flame and darkened brilliant fabric colors from one side of the quilt to the other. I wanted to depict the fact that I’m still shades of these dazzling colors, but Alzheimer’s has taken some of the vibrancy away. I wasn’t going for something pretty when I stitched this quilt. I wanted something powerful.”

“Because my brain can sometimes be overwhelmed and take longer to process through things, this quilt let me confine my focus to four-inch squares and then eventually pull them together.” The “movement” in the quilt was accomplished by seed stitching. The seed stitching rules are; no stitch can be longer than a grain of rice; no two stitches can touch each other; and no stitch can repeat itself in a line.

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Carol enjoys being a textile artist –  delighting in the fact that she is still competitive in this part of her life’s journey, “I can compete on equal footing in these quilting competitions with people who don’t know I have the disease, “ she says. “They aren’t making special considerations for me the way people do when they know I have Alzheimer’s”.

 

Carol is more than a competitive quilter. She is a world traveler, Ambassador to the Alzheimer’s Association, a past member of the Alzheimer’s Early-Stage National Advisory Board, and does public speaking to create concern and awareness for the disease. She has also participated in educational videos that help doctors detect and diagnose the disease earlier. “But, this quilt – “My Alzheimer’s Voice “- provided a different avenue and an extension to my own voice,” says Carol. “It’s a legacy piece that will continue to speak for me when I no longer can speak for myself”.

My grandmother taught me how to sew,” she says. “She passed from Alzheimer’s disease, so I love that she taught me this skill, and I can share a piece of both us in this quilt.”

My Alzheimer’s Voice” took Carol nearly four months to make and will be               exhibited online and in the collection that opens in New York, then travels to Virginia and Los Angeles this summer. The exhibit will end in Houston in November.

IMG_2534001 (1) “The quilt displays a set of colors that become more opaque as they pass through the ‘Alzheimer’s vortex’, but they aren’t fading. I may be ‘singed’ around the edges as the fabric shows, but I’m still here. I’ve got an important story to tell – whenever and wherever I can create awareness, there is more opportunity for a cure,” she says.

You can learn more about the Quilt Alliance contest at: http://quiltalliance.org/contest/2017contest/

Learn more about the Alzheimer’s Association or for questions about Alzheimer’s disease and/or caregiving visit: alz.org or call the 24/7 Helpline at 1.800.272.3900.

The City Of Orlando Lights Up Purple For A Purpose For Alzheimer’s & Brain Awareness Month – June 2017 & “The Longest Day”

June 19, 2017, Orlando, FL –  This Wednesday, the City of Orlando remains vibrant, strong and committed to casting a spotlight on Alzheimer’s disease as the image-15City goes “purple with a purpose” for the second year. At sundown Wednesday evening, many different public venues will be lit purple to spread awareness for Alzheimer’s disease and its now global event, “The Longest Day”. The Longest Day is the summer solstice, and the special day that caregivers are celebrated all over the nation and the world…

  • “Thanks to mayor Dyer and the City of Orlando for helping to bring greater awareness to the plight of the 520,000 Floridians suffering from the effects of Alzheimer‘s disease – a terminal disease that has a profound impact on not only the victim, but the entire circle of family and friends. As an Alzheimer’s caregiver myself, I’ve seen firsthand the unique challenges this disease poses to families across our state. By “turning Orlando purple”, city leaders are again showing care, compassion and support for those struggling with this disease while the growing Alzheimer’s community looks forward to meeting its first survivor one day,” says Rep. Scott Plakon of Orlando.
  • In an effort to create maximum awareness for fellow Floridians, Rep. Plakon and Sen. Linda Stewart from Orlando spearheaded the Proclamation to officially recognize this week as Alzheimer’s and Dementia Awareness Week in Florida to coincide with The Longest Day on June 21
  • There are an estimated 5.5 million Americans; 520,000 Floridians, and nearly 60,000 greater Orlando area residents living with Alzheimer’s disease. Florida has the second highest incidence rate in the country for Alzheimer’s and dementia making it “ground zero” for the disease. Alzheimer’s it the sixth leading cause of death in the country, and the only disease among the top 10 leading causes of death without a prevention, treatment or cure.

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  • During the month of June, the Alzheimer’s Association is celebrating Alzheimer’s &
    Brain Awareness Month (ABAM) in an effort to raise awareness and support, as Facebook_Image_ABAM2016_gopurple_girlwell as to let Orlando area residents know that there is help in the community. “We offer a 24/7 Helpline manned by dementia specialists every day of the year, every hour of the day and night,” says vice president of programs, Julie Shatzer. “We provide caregiver support groups, education programs, art programs and a host of offerings both in English and in Spanish to all residents,” she adds.
  • Major landmarks in the area will be purple all day and night on June 21,to image-14
    honor those who are caregivers for their loved ones; where every day might
    feel like the longest day, the Alzheimer’s Association is hosting its annual Longest Day® event from sunrise to sunset nationwide and globally, to celebrate all those that have succumbed to the disease and the many caregivers who have loved them.
  • Major sites that are going purple with a purpose should include:

 

Orlando venues being lit purple (see 2016 pictures below):

·         Astrogenesis II

·         Global Coverage

·         Take Flight

·         Union

·         Cedar of Lebanon

·         Amway Center Sign

·         Orlando’s Tower of Light

·         Lake Eola Fountain, Lake Eola Park –  Downtown

·         Orlando Sign at Citrus Bowl

Alzheimer’s Association®

The Alzheimer’s Association is the leading voluntary health organization in Alzheimer’s care, support and research. It is the largest nonprofit funder of Alzheimer’s research. The Association’s mission is to eliminate Alzheimer’s disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health. Its vision is a world without Alzheimer’s. Visit alz.org or call 800-272-3900.

Blondes vs. Brunettes Tallahassee

Welcome to Alzheimer’s Association’s Blondes vs. Brunettes®, where two teams of women – divided to reflect the age-old rivalry between blondes and brunettes – compete in a flag football game to help raise awareness and funds in the fight against Alzheimer’s disease.

Our passion and hard work will take us from practice to the playing field, but our success will rely upon the support of our friends and families and upon all of those willing to donate to this important cause. Together, we can tackle Alzheimer’s

There’s still plenty of time to donate, so visit www.bvbtallahassee.org and make a donation to the Alzheimer’s Association today! #ENDALZ

Team BlondeIMG_4450

Jackie BarkerIMG_4445

Katie Britt (Captain)

Meghann Bryant
Pace Callaway (Coach)
Dustin Frost (Coach)
Lindsay Frost
Kayla Joseph
Amanda Leighty
Nicole Nicholas
Tiffany Parker
Allison Rivers
Nicole Sabol
Christa Salerno
Kelly Schmidt
Lena Shields
Lauren Snyder
Rob Summers (Coach)

Team Brunette

Jossie BarrosoIMG_4448

Christi Billington
Wendi Cannon
Susana Garcia
Annette LeFranc
Jutika Maharaj
Diana Martin
Kim Masson
Sam McCray (Coach)
Allison Menendez
Victoria Pope
Victoria Richmond (Captain)
Victoria RoseCandi Scott
Megan SilverBrooke Sims
Gillian Smith
Courtney Starling
Rachel Steinman (Captain)
Kate Widness

Join us at the Post-Game Celebration!

Florida Wing Factory 3551 Blair Stone Road Tallahassee, FL 32301

10% of the proceeds will benefit this year’s game!

Want to join in on the fun?

If you’d like to join us as a player, coach, volunteer, sponsor, or community partner, please email Hannah Volz, Associate Director of Community Outreach, at hvolz@alz.org.

Find us online at bvbtallahassee.org or on Facebook @BlondesvsBrunettesTally.

 

RivALZ Game Day ProgramThere’s still plenty of time to donate, so visit www.bvbtallahassee.org and make a donation to the Alzheimer’s Association today! #ENDALZ

Alzheimer’s Association Traveling Cards

IMG_8347Our Alzheimer’s Association traveling cards can be helpful in many situations – whether traveling to the grocery store, a restaurant or even through the airport these cards can help you communicate to others that extra patience is required in a quick, discreet way. You can contact your local office for cards by calling 1.800.272.3900 or print from your own home using these files:

These files are made to work with business card template paper by Avery 5371 but of course regular paper and a pair of scissors always works as well.

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• For more traveling tips, visit Traveling Tips for People in the Early Stages.

• For information on managing activities, check out Alzheimer’s Association Summer Safety Tips

• On how to navigate the holidays, take a look at Holiday Tips – How to Manage the Holidays when your loved one has dementia or Alzheimer’s disease.

Blondes vs. Brunettes – using Football to Tackle Alzheimer’s – one play at a time…

from the Tallahassee Democrat…

An age-old rivalry is being put to good use.

Tallahassee’s annual Blondes vs. Brunettes flag football game is coming up next month. The game is part of the Alzheimer’s Association RivALZ league, which raises funds nationwide for Alzheimer’s awareness.

Hannah Volz, a spokeswoman for the Central and North Florida chapter of the Alzheimer’s Association, said about 40 different RivALZ games happen all over the country. They aren’t all Blondes vs. Brunette games, any rivalry counts for RivALZ.

Tallahassee’s event is on May 13th on Florida High’s campus.

For Volz, the issue is a personal one. Many players who come out to participate have been impacted by Alzheimer’s in some way – if it’s not personal, there aren’t many degrees of separation.

“I lost three grandparents to Alzheimer’s and one to vascular dementia,” she said. “This is a cause that’s really close to my heart. It’s been kind of cool to go from being a volunteer to being a staff person now working for the Alzheimer’s association.”

The game isn’t limited to blondes and brunettes, of course. People outside those two hair colors are considered free agents, capable of joining either squad.

“We welcome everybody,” Volz said with a smile.636279594890855207-RivALZ-004.jpg

The fundraising goal for this year’s event is $20,000. As of Sunday evening, $8,387 has been raised toward that goal.

There are still fundraising events coming up before the game – the group has a Facebook page with player stories and updates on upcoming events.  Volz said between 100 and 200 people come out each year to the event.

Tori Richmond, who has been participating in the event for the last four years, said thanks to events like the RivALZ game, there’s more awareness of Alzheimer’s.

“My grandmother started showing signs of Alzheimer’s about two years before she was officially diagnosed,” she said. “If my family would have had more awareness about what the signs are, personality changes, I think we could have helped her out a lot more.

“Just learning more about it and being able to educate other people about it and (show) how far we’ve come in terms of Alzheimer’s awareness and research.”

Richmond, a former Florida State swimmer who plays for the Brunettes squad, said the event is for anybody who wants to player. She has personal experience with Alzheimer’s, that’s not the case for every member of the team.

Plus, not every member of the team is a former college athlete.

“We practice so much that ultimately, you will see an improvement,” she said. “Last year, one of our teammates came out having never played a lot of football. She was probably one of our most dedicated players. She came to every practice and she ended up catching an interception in the game.”

Richmond said playing in the game and meeting the women involved has given her a different perspective on Alzheimer’s and its impact in Tallahassee.

“I look forward to this every year,” she said. “Every year we start earlier and earlier. It’s a social thing, as well as just doing something for the community and learning more about the community. All of the women are leaders in this community.”

For more information, visit bvbtallahassee.org.

http://www.tallahassee.com/story/sports/2017/04/16/blondes-vs-brunettes-raises-funds-alzheimers-research/100259550/

51% of tweets about dementia contain stigma: study ~

from McKnight’s Senior Living Article

Karen Hooker, Ph.D. (Oregon State University College of Public Health and Human Sciences)Karen Hooker, Ph.D. (Oregon State University College of Public Health and Human Sciences)

Fifty-one percent of tweets by private users of Twitter accounts contain comments that are stigmatizing when they mention dementia or the people who have it, according to a study recently published in Journals of Gerontology: Psychological Sciences.

Researchers at Oregon State University, Corvallis, OR, made the determination after they developed software and analyzed 33,000 tweets that made some reference to Alzheimer’s disease or another form of dementia.

“It was shocking to me how many people stigmatized Alzheimer’s disease and reinforced stereotypes that can further alienate people with this condition,” said one of the paper’s authors, Karen Hooker, Ph.D., who holds the Jo Anne Leonard Petersen Endowed Chair in Gerontology and Family Studies in the OSU College of Public Health and Human Sciences.

The stigma, she added, can lead people with dementia to perform worse that they would have otherwise, due to negative expectations and stereotypes.

“This type of stigma can make it less likely that people will admit they have problems or seek treatment, when often they can still live satisfying, meaningful and productive lives,” Hooker said. “Our attitudes, the things we say, affect others, and social media is now amplifying our ability to reach others with thoughtless or hurtful comments.”

Those concerned about dementia and those who have it, the authors suggested, can try to be more conscious of their own comments on social media and more willing to engage with others who are using language that seems insensitive or potentially hurtful.

“We should also consider ways to combat stigma and negative stereotypes by tweeting about the positive experiences of persons with dementia and people in their social networks,” Hooker said.

Lead author of the study is Nels Oscar, an OSU graduate student in the College of Engineering. Additional authors include Pamela A. Fox, Racheal Croucher, Riana Wernick and Jessica Keune.

http://www.mcknightsseniorliving.com/news/51-of-tweets-about-dementia-contain-stigma-study/article/650463/