Monthly Archives: November 2016

Become an Alzheimer’s Association Community Representative (AACR)

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Become an Alzheimer’s Association Community Representative (AACR)

AACRs assist the Alzheimer’s Association volunteer team in meeting the community needs by representing the Alzheimer’s Association at health and wellness fairs. Become an AACR and join us in our fight against Alzheimer’s disease!

What is an Alzheimer’s Association Community Representative (AACR)?

AACRs assist the Alzheimer’s Association in meeting the community needs by representing the Alzheimer’s Association at health and wellness fairs.

Become an AACR and join us in our fight against Alzheimer’s disease!

AACR Testimonies

How can I become an AACR?

Create a volunteer profile and select “Alzheimer’s Association Community Rep.” You will need to provide two references: one personal and one educational/professional.

CREATE a Volunteer Profile

What can the AACR expect from the Alzheimer’s Association?
  • A thorough, initial training/orientation
  • Materials to support AACR activities
  • Opportunities to attend education programs
    (i.e., webinars, audio conferences and face-to-face)
AACR Qualifications?

AACRs must be organized, energetic, comfortable with public speaking and enjoy interacting with others. AACRs need not have professional experience in dementia care, though some personal experience is preferable.

Above all, AACRs must keep in mind that while serving in this role, they are representing the Alzheimer’s Association and no other organization. To avoid issues of conflict of interest, AACRs may not work in organizations or programs that are potential Association referral sources.

You can take steps to live your best life with Alzheimer’s

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You can take steps to live your best life with Alzheimer’s

Making choices about how you will live your life after a diagnosis of Alzheimer’s disease or another dementia can be very empowering. It’s possible to live well with Alzheimer’s by taking control of your health and wellness and by focusing your energy on the most meaningful aspects of your life.

Chapter honors Mission Movers

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Chapter honors Mission Movers

Last week, at our first annual Leadership Celebration, we honored dedicated volunteers, Mission Movers, people and organizations that have gone to extraordinary lengths to advance our cause. This year our Mission Movers include: Dani Jachino, Ruth Reko, Bankers Life, Alan Krashesky, Alex Magiera and Phoebe Stone-Nitekman from the JEMP-D Foundation.

Last week, at our first annual Leadership Celebration, we honored dedicated volunteers, Mission Movers, people and organizations that have gone to extraordinary lengths to advance our cause. This year our Mission Movers include: Dani Jachino, Ruth Reko, Bankers Life, Alan Krashesky, Alex Magiera and Phoebe Stone-Nitekman from the JEMP-D Foundation.

Advocate
Dani Jachino’s commitment to the fight against Alzheimer’s disease is unwavering, and that passion is complimented by an incredible sense of humor, joyousness and level of subject-matter expertise. Following her mother’s diagnosis, Dani began attending Association support groups. She quickly became a support group facilitator, and has since become one of the Association’s top fundraisers, an indispensable part of the Walk to End Alzheimer’s® on Chicago’s planning committee, a member of the Greater Illinois Chapter’s Board of Directors, a congressional Ambassador and, most recently, a member of our Constituent Advocate Program. Tonight, we honor all of her work building support on Capitol Hill and in Springfield for Alzheimer’s disease research funding and dementia-capable laws.

Volunteer
Ruth Reko brings dedication and empathy in its purest form to her volunteer role. Ruth connected with the Greater Illinois Chapter in October, 2010 after reviewing a posting regarding the need for Helpline volunteers, and has since contributed 3,000+ hours and counting of her time and talents to helping those in need. If that weren’t enough, Ruth is also an Ambassador with the Public Policy team working to enhance the Association’s federal government relations through personal contact with targeted members of Congress. In this role, Ruth assists the Association to meet its federal legislative goals by working with staff to implement federal advocacy activities at the community level. She also attends our annual Illinois Action Summit, held at the state capitol in Springfield working with other advocates to make Illinois a dementia capable state.

Corporate Partner
Bankers Life agents and employees witness firsthand the impact that Alzheimer’s disease has on its customers, their families and their caregivers. That’s why in 2003 this Chicago-based company established Forget Me Not Days®, a nationwide fundraising campaign to benefit the Alzheimer’s Association. What started as a grassroots fundraiser has blossomed into a national fundraising campaign that has helped raise more than $3.3 million nationally for the Alzheimer’s Association through Forget Me Not Days® collections and corporate donations and more than $200,000 in Illinois for the Association. Complementing the Forget Me Not Days® campaign is Bankers’ partnership with the Alzheimer’s Association Walk to End Alzheimer’s®. Including corporate sponsorship and teams, this represents additional generosity of more than $200,000 for the Association in Illinois.

Community Partner
Award-winning journalist Alan Krashesky has been a dedicated partner and friend of the Alzheimer’s Association, Greater Illinois Chapter, donating countless hours, serving as a local spokesman and most notably, as host of the Walk to End Alzheimer’s in Chicago for more than 15 years. Sadly, Alan knows all too well the damage that Alzheimer’s disease does to families across our country every day: he first got involved after his mother was diagnosed. Not long after she passed away, his mother-in-law was diagnosed with the disease. Like all of the leaders in this room, this experience fueled in him a desire to act and he has been a great champion of our organization and our cause.

Junior Board Leader
At the age of 15, Alex Magiera was forced to live and breathe Alzheimer’s disease, twenty-four hours a day, seven days a week. Her mother was diagnosed with early onset Alzheimer’s at the age of 50. As with all of the other people whose leadership is being celebrated tonight, Alex took an incredible source of pain and is using it to change the lives of others for the better. Regularly speaking on behalf of our chapter and the national organization, Alex has traveled the state and country fearlessly sharing her story. An educator and graduate of Pepperdine University, she is actively involved in the Junior Board’s fundraising and public service efforts. As the Junior Board’s Chair of Web Communications, she is showing the next generation why, until a cure is discovered, our fight is their fight too.

Philanthropist
You might say that fighting Alzheimer’s disease is the family business for Phoebe Stone-Nitekman along with her sisters and cousins. Together they form the JEMP-D Foundation and have been supporting the Alzheimer’s Association practically since its founding over 30 years ago. The programs that are most compelling to the JEMP-D directors are the ones that reach under-served populations, providing care and support services to those most in need. Their support of Association programs that reach diverse communities has been instrumental in allowing the chapter to reach many more individuals who need Alzheimer’s information and support.

Alzheimer’s caregivers may struggle living with the disease

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Alzheimer’s caregivers may struggle living with the disease

Jeff Borghoff was diagnosed with younger-onset Alzheimer’s disease in 2015. Borghoff, a member of the Alzheimer’s Association National Early-Stage Advisory Group, says it’s often family members and caregivers that struggle more than the person with the disease. He makes sure to thank his caregiver, his wife Kim, for everything she does for him on an everyday basis. You can honor a caregiver in November during National Alzheimer’s Disease Awareness Month and National Family Caregivers Month.

In 2015, I was diagnosed with younger-onset Alzheimer’s disease. My father, 85, and the youngest of 10, is living with Alzheimer’s, as well as one of his brothers. Their father also had the disease.

Still fresh in my mind is an early incident at my grandparent’s home. My grandmother was trying to tell my grandfather where the closet was so that he could hang his coat, as he had done so many times before. He was standing right in front of the closet, but couldn’t seem to find it. I recall her looking at me, saying, “He’s confused, honey.”  At that time I had no idea how he could have been possibly confused. That event, more than 45 years ago, left an indelible mark in my memory that resonates today as I live my daily life with Alzheimer’s.

My parents and daughter packing goody bags for the kids of the Palm Grove church.

My faith helps me approach each day with hope. Almost every morning I stand in the shower and I say to myself, “I won’t be here forever, but I’m here now, so I need to live and advocate today.” I know that God has my back.  I’ve always been a doer and God has given me another opportunity to glorify him, as I know I have been prepared for this journey.

In Ocean City with daughters Aubreigh & Erin, my wife Kim, son Michael &  his girlfriend Joanna.

My wife Kim is amazing, and her compassion and faith are exceptional.  She has stood by me 100 percent through this entire experience.  As soon as I was diagnosed, she began researching the disease and joined a care partner support group through the Delaware Valley chapter of the Alzheimer’s Association. We are an eHarmony success story, married 10 years now! This is the second marriage for both of us and blending our families over the last decade has been both challenging and rewarding.  We credit the success of our marriage to our strong faith.  We know that we could not navigate the complexities of this illness without God to sustain us.

My mom is my dad’s caregiver. Kim and my mom drive us to our appointments, as we’re both unable to drive. They share the belief that Alzheimer’s is nothing to be ashamed of.  It’s not contagious and it does not define who a person is. They advocate for us and support us every step of the way.

At the Jersey City Walk to End Alzheimer’s.

Although my dad can’t lead a very active lifestyle due to a stroke, he loves to tell stories about his family and his time serving our country during the Korean conflict. It may be challenging to pull everyone together for family activities these days, but we get together as much as possible.  We spend a week every year in Ocean City and go on camping trips.  We are also very involved with our church; Kim and I have been working for many years as missionaries to a children’s church in Jamaica.

In addition to her monthly caregiver support group, Kim attends state advocacy meetings and is my main source of support at the Walk to End Alzheimer’s where I have spoken on behalf of others living with Alzheimer’s at the promise garden ceremonies. She does so much for me and I try to show her gratitude all the time. I recently surprised her with a weekend to a cozy bed and breakfast in Lancaster, Penn., to enjoy the autumn colors!

At the church where we do missionary work.

I often think that it’s the family members and caregivers that struggle more than the person with the disease. I know the job of a care partner or caregiver is very challenging and can so often go unrewarded or underappreciated, so I make sure to thank Kim for the things she does for me on an everyday basis.

Kim and Mom, and all care partners and caregivers: I know your job is not easy.  Seeing your loved ones change in such a drastic way, the promise of a long life together seemingly dashed with the diagnosis—I know it’s difficult.  You have to do everything in your power to maintain what control you do have over the situation.  For myself, and for some of those with an Alzheimer’s diagnosis who have become incapable of expressing our emotions – thank you from the depths of our hearts.

Our hearts are still beating.  We’re still here, we still love.  Thank you for loving me … thank you for loving us.

About the Author: Jeff Borghoff is raising awareness of Alzheimer’s disease as a member of the Alzheimer’s Association 2016 National Early-Stage Advisory Group (ESAG).

Ask the Helpline – Holidays and dementia

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Ask the Helpline – Holidays and dementia

This column is one in a regular series in which our Program Services team answers frequently asked questions. In this issue, we hear from Melissa Tucker, Director of Helpline and Support Services, talk about the holidays which can be a challenging time for families coping with dementia. Read more on ways to manage the holidays for yourself and loved ones.

The holidays can be a challenging time for families coping with dementia. Planning ahead and knowing what to expect can make this time less stressful. It’s also important to adjust your expectations—don’t try to put too much on yourself or on the person with dementia.

Planning ahead
Communication is key here. If you have people coming in from out of town you may need to clearly communicate with them regarding your caregiving situation, and what the person with dementia is and is not capable of. In the early stages of dementia, your loved one may seem to not have changed very much, but may have trouble with large groups or following a conversation. Telling visitors ahead of time that they can help by being patient, and not interrupting or correcting the person with dementia, will help prevent frustration and hurt feelings.

If the person with dementia is in the later or middle stages, there may be significant changes since the last time the visitors saw him or her. These changes can be difficult to accept, and it can be helpful to prepare the visitors in advance so that they know what to expect. For example, if the person with dementia might not recognize them it can be less hurtful if they understand in advance that this is a part of the disease process.

Don’t take on too much
Holidays can be stressful even without the added responsibility of being a caregiver. Do not be afraid of scaling back your celebration, and delegate, delegate, delegate. Clear communication is key here, as well. Consider scheduling a conference call with other family members to divide up responsibilities, and to set appropriate boundaries on what you can and cannot do. Consider scaling back to a smaller celebration to avoid overwhelming yourself and the person with dementia.

Focus on meaning
Look for ways to involve your loved one in meaningful activities that they can enjoy. Singing along with holiday songs can allow people even in the later stages to connect and feel part of the holiday. Looking through photo albums of past holidays and reminiscing with your loved one can be a soothing and meaningful way to spend time together. Perhaps they can help set the table or tie the ribbons on the gifts. Look for ways that your loved one can be a part of the celebration by scaling down activities to a level that is manageable for them.

Celebrating in a facility
When a family member is in a residential facility, people often want to know if it is a good idea to bring them home for the holidays. Consider carefully if this is wise for you and for the person with dementia. Sometimes changes in routine can be upsetting for the person with dementia, and they may not do well in a crowd of noisy people. Think about joining your loved one at the facility in their holiday celebration.

Take care of yourself
Be realistic about what you can and cannot do during this stressful time. Caregivers often feel guilty that they are not “doing enough” for the person with dementia and for their families. Holidays can make these feelings even harder to deal with when we have so many expectations about how things are supposed to be. Try to let go of these expectations, and give yourself some quiet time to grieve if you need to. As much as you can, focus on the moments of connection and happiness that you share with all your family members, and give yourself permission to not do it all.