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People living with Alzheimer’s encourage earlier conversations about disease’s warning signs

Alzheimer’s Association West Virginia Chapter shares tips to help with discussion

CHARLESTON, W.Va. – June is Alzheimer’s & Brain Awareness Month, and the Alzheimer’s Association together with advocates in the early stages of the disease are encouraging families to talk about memory and cognition concerns sooner. Early diagnosis offers many benefits, including access to more effective medical and lifestyle interventions and the ability for the person with Alzheimer’s to take an active role in planning with family members for the future.Alzheimer's Association

To help people understand early symptoms of Alzheimer’s or behaviors that merit discussion, theAlzheimer’s Association offers 10 Warning Signs. Should these signs appear, it is important to talk about them with person experiencing symptoms and encourage them to speak with a medical professional.

“Approaching a family member or loved one about their forgetfulness, confusion or other signs associated with Alzheimer’s or dementia can be difficult, but in order to help our loved one in the long-run, we have to get past our own fears and denial,” said Sharon M. Rotenberry, Executive Director for the Alzheimer’sAssociation. “The sooner a person receives a diagnosis, the sooner that person and their family can begin understanding the disease, obtaining support and planning for the best possible future.”

New findings from an Alzheimer’s Association survey found a majority of Americans would be concernedabout offending a family member (76 percent), or ruining their relationship (69 percent), if they were to approach that person about observed signs of Alzheimer’s. More alarming, 38 percent said they would wait until a family member’s Alzheimer’s symptoms worsened before approaching them with concerns. Additionally, nearly 1 in 3 Americans (29 percent) would not say anything to a family member despite their concerns.

Alzheimer’s is a brain disease that causes a slow decline in memory, thinking and reasoning skills. If you notice any of the 10 Warning Signs of Alzheimer’s in yourself, a family member or a friend, it’s important not to ignore them. Schedule an appointment to speak with a doctor. Though the experience can be daunting, early detection can help you make informed decisions about the future and focus on living in a way that’s meaningful to you. Following are steps you can take following an Alzheimer’s diagnosis to move forward and live your best life.

1. Get educated: It’s normal to be hesitant or resistant to learning how the disease will progress and affect your life. However, learning about your Alzheimer’s diagnosis is the first step in empowering yourself to make important decisions about how you want to live your life and how you will plan for a future. Learn at your own pace and remember that you are not alone. There are people who understand what you are going through, and help is available.

2. Take time to process: There’s no “right” way to respond to an Alzheimer’s diagnosis. Some people experience depression and may want to withdraw. Others are comforted by knowing what’s wrong and feeling empowered to prioritize what’s most important in life. There’s also no limit on the length of time someone is “allowed” to grieve. Take time to fully process the diagnosis.

3. Explore medications: Currently, there is no cure for Alzheimer’s, nor are there any treatments to prevent, reverse or slow the progression of the disease. However, there are medications that may help lessen the symptoms of Alzheimer’s, such as memory loss and confusion, for a limited time. An early Alzheimer’s diagnosis provides you with a better chance of benefiting from treatment.

4. Communicate your wish: Do you know who you would want to make decisions for you in the event you’re no longer able to? An early Alzheimer’s diagnosis means you can put your long-term care wishes in writing. Being open with your family and support network about what you want during each stage of the disease can give you peace of mind, reduce the burden on family members and prevent disagreements.

5. Plan your financial future: An Alzheimer’s diagnosis can throw a wrench into your best-laid plans. Don’t put off talking about finances and future care. Take time to make sure your will and estate plans are up-to-date and factor the disease into your financial plans. Putting financial and legal plans in place now allows you to be as involved in these decisions as you’d like to be.

6. Enroll in a clinical trial: Without clinical trials, there can be no better treatments, no prevention and no cure for Alzheimer’s disease. By enrolling in a clinical trial, you can help accelerate progress and provide researchers with valuable insights. Participating in a clinical trial also gives you access to medical care at leading healthcare facilities, often free of cost

7. Stay connected: Not all family and friends live near one another, which can complicate the logistics of long-term care. Following a diagnosis, people living with Alzheimer’s are at their most vulnerable, and it’s important for them to find better ways to stay connected and make the most of the time left. Be sure to keep in touch and make plans for regular communication.

8. Find a community: An Alzheimer’s diagnosis opens up a community of people who understand what you and your family and friends are going through. Sharing your personal journey with the disease and listening to others’ can be both therapeutic and insightful. You may learn you’re not alone in the challenges you experience, and you can find new ways to cope and improve quality of life.

9. Join the cause: Joining the Alzheimer’s cause can a give a sense of renewed purpose, whether it’s through advocating for policy changes, fundraising for research, raising disease awareness, combatting stigma or volunteering. Taking action empowers you to bring us closer to a world without Alzheimer’s.

10. Live your best life: Having Alzheimer’s may help you decide how you want to spend your time, in the way that you’re able. Everyone is different. Some people may want and need to continue working during the early stage of the disease, while others decide to retire immediately. Some plan big vacations, while others long to spend more time at home. Focus on the aspects of your life that give you the most joy and aim to spend your time in the way that’s most meaningful to you.

If you notice any of the 10 warning signs of Alzheimer’s in yourself or someone you know, don’t ignore them. Early detection makes a world of difference, and so does the way you approach the conversation with a family member or a friend. If you notice a pattern of memory loss or behavioral issues that are affecting one’s ability to function, it’s essential to talk about it so they can be evaluated. The Alzheimer’s Association offers these six tips:

  1. Have the conversation as early as possible – Ideally, it’s best to talk about the Alzheimer’s warning signs with a family member or friend before they even occur, so that you can understand how someone would want you to approach them about it. However, many people aren’t planning for Alzheimer’s before it happens. If you’re noticing signs of dementia, start a conversation as soon as possible, while mental functioning is at its highest and before a crisis occurs.
  2. Think about who’s best suited to initiate the conversation – There might be a certain family member, friend or trusted advisor who holds sway. Consider asking this person to step in and plan around how to have the most supportive and productive conversation.
  3. Practice conversation starters – The following phrases can help broach the conversation.
    1. “Would you want me to say something if I ever noticed any changes in your behavior that worried me?”
    2. “I’ve noticed a few changes in your behavior lately, and I wanted to see if you’ve noticed these changes as well?”
    3. “Lately I’ve been considering my own long-term care plans, and I wanted to see if you’ve done any advance planning you can share with me?”
  4. Offer your support and companionship – Seeing a doctor to discuss observed warning signs of Alzheimer’s may create anxiety. Let your family member or friend know that you’re willing to accompany them to the appointment and any follow-up assessments. Offer your continuous support throughout the diagnosis process.
  5. Anticipate gaps in self-awareness – It can be the case that someone showing the warning signs of Alzheimer’s is unable to recognize those signs in themselves. Be prepared to navigate confusion, denial and withdrawal, as people may not want to accept that their mental functioning is declining.
  6. Recognize the conversation may not go as planned – Despite your best intentions, a family member may not be open to discussing memory or cognitive concerns. They may get angry, upset, and defensive or simply refuse to talk about it. Unless it’s a crisis situation, don’t force the conversation. Take a step back, regroup and revisit the subject in a week or two. If they still refuse to get help, consult their physician or the Alzheimer’s Association for strategies that may help.

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