YOU ARE NOT ALONE

YOU ARE ENOUGH. CAREGIVING DURING THE HOLIDAYS

BY NICOLE HEROUX WILLIAMS I PHOTOS BY NSP STUDIO BY TERESA GALBIER

During my last two decades at the Alzheimer’s Association I have found that one of the most joyous times of the year for our caregiving families is the winter holiday season. As families gather to celebrate their faith and traditions, enjoy a meal together or exchange presents, homes become filled with the scent of evergreen, the sounds of laughter, and the music of the season.

This time of year can also be one of the most challenging for families impacted by dementia, as well, bringing with it stress, disappointment and even sadness. The person living with Alzheimer’s may feel a special sense of loss because of the changes he or she has experienced. Those with early onset Alzheimer’s may experience minor changes. Some withdraw and become uncomfortable in social settings, while others relish seeing family and friends. At the same time, caregivers may feel overwhelmed trying to maintain traditions while providing daily care for their loved one.

WIth some planning and adjusted expectations holiday celebrations can still be joyous. The key is to check in with one another and to agree that you may need to make some changes to the traditions that you’ve held dear.

If you know a caregiver offer them a helping hand, run errands for them and sit with their loved one so that they can do theirshopping and run errands. Plan the holidays together, focusing on the things that bring happiness and letgo of some of the activities that may seem overwhelming or stressful.

Rethinking holiday plans and simplifying them will help everyone involved. It may be something as simple as planning a movie night together to watch “It’s A

Wonderful Life” or “Miracle on 34th Street” then putting on some holiday music and baking cookies.

Here are some tips for reducing holiday stress for those living with Alzheimer’s and dementia and those who are caring for them:

● Set expectations: Let guests know what to expect before they arrive and offer them ideas on how they can be helpful. Recommend activities that your loved one can do with them and share tips on how best to communicate with them. Keep in mind that simultaneous conversations can be challenging for people living with Alzheimer’s, so try engaging them one-on-one, in a quiet part of your home.

● Involve the person with Alzheimer’s. Involve your loved one in safe, manageable holiday preparation activities that he or she enjoys. Ask them to help prepare food, wrap packages, help decorate or set the table. Avoid using candies, or artificial fruits and vegetables as decorations because a person with dementia may confuse them with real food. Bright blinking lights may also cause confusion. Be aware of your surroundings and how they may cause unnecessary stress and anxiety.

Plan ahead. When attending a holiday party, prepare the host for special needs, such as a quiet room for the person to rest when they get tired, away from the noise and distractions.

● Adjust expectations. Call a face-to-face meeting or arrange for a group discussion via telephone, video chat or email for family and friends to discuss holiday celebrations. Make sure that everyone understands how important it is to manage expectations and remember to ask for help. You would be surprised

“Please know that you are not alone. The Alzheimer’s Association is walking the journey with you and we want you to know that we are here for you when you need us most.”

how much others want to support the caregiver if you allow them to.

● Let others contribute. Host a potluck dinner or ask others to host one in their home. Consider breaking large gatherings into smaller visits of two or three people at a time to keep the person with Alzheimer’s from getting overtired and overwhelmed. ● Maintain a normal routine. Sticking to the person’s normal routine as much as possible will help keep the holidays from becoming disruptive or confusing. Plan time for breaks and rest for yourself and your loved one.

If your loved one resides within a residential community, join them

● Adapt gift giving. Provide your family and friends with a list of suggestions for useful, safe and enjoyable gifts. These may include comfortable, easy-to-remove clothing; CDs of favorite music; or favorite foods and photo albums of family and friends. If friends or family members ask, suggest a gift certificate or something that will help make things easier, like house cleaning, lawn or handyman services, laundry services, restaurant gift cards or even volunteers to visit with your loved one for an afternoon.

● Do a variation on a theme. If evening confusion and agitation are a problem, consider changing a holiday dinner into a holiday lunch or brunch. If you do keep the celebration at night, keep the room well-lit. for their community’s holiday party. Encourage other family members and friends to come with you to this special event and take lots of photos while you’re there. After you’ve printed out the photos you can bring them with you during your next visit. The lingering impact from that joyous occasion will warm the heart of your loved one as they recapture that moment when you were all together and will give you an opportunity to recapture a warm memory for yourself, as well.

Please know that you are not alone. The Alzheimer’s Association is walking the journey with you and we want you to know that we are here for you when you need us most.

About the Alzheimer’s Association

The Alzheimer’s Association is a worldwide voluntary health organization dedicated to Alzheimer’s care, support and research. Our mission is to lead the way to end Alzheimer’s and all other dementia — by accelerating global research, driving risk reduction and early detection, and maximizing quality care and support. Our vision is a world without Alzheimer’s and all other dementia®. Visit alz.org or call 800.272.3900.

YOU ARE ENOUGH. THE AHEAD STUDY

BY NICOLE HEROUX WILLIAMS I PHOTOS BY NSP STUDIO BY DR EMILY CLARK

Alzheimer’s Clinical Trial Seeks to Prevent Memory Loss

Groundbreaking study seeks diverse volunteers who have been historically underrepresented in research

Millions of people in America 65 and older live with Alzheimer’s disease, and the number is rising rapidly. According to the Alzheimer’s Association, more than 410,000 people in New York have the disease. Black and African Americans are especially at risk for the disease, with incidence rates two times higher than white adults. Black adults also have an increased likelihood of being diagnosed with further progression of the disease than their White peers.

To help address these disparities, researchers at the University of Rochester Medical Center in Rochester, New York are inviting healthy adults between 55-80 to join the groundbreaking AHEAD Study, funded by the National Institutes of Health and Eisai. The AHEAD Study is the first clinical trial that aims to help prevent Alzheimer’s disease before it starts by enrolling participants as young as 55, who have no memory problems. Eligible participants may receive access to an investigational study medication aimed at delaying memory decline in people up to 20 years before the symptoms of Alzheimer’s disease appear. Discovering a treatment that targets brain changes early means doctors may be able to one day prevent memory loss.

Clinical trials like the AHEAD Study need participants of every race, ethnicity, socio-economic status, and geographical location to join the study so we can find a treatment for Alzheimer’s disease that works for everyone. Diverse representation, in particular, is critical to helping researchers learn more about why people of color are at higher risk of Alzheimer’s disease. For Black adults, their involvement is especially important because despite their higher likelihood of developing Alzheimer’s disease, they are underrepresented in clinical research, currently making up less than nine percent of Alzheimer’s clinical trial participants

Researchers say getting ahead of the disease will take all of us working together to find a potential treatment or a cure. If you live in the Rochester, NY area and have a history of Alzheimer’s disease in your family, or if you are worried about your memory, consider joining the AHEAD Study. Contact researchers at 585-602-5207 or email audrey_rice@urmc.rochester. edu.