Alzheimer’s Action Day on September 21st provides a chance for early stage patients, caregivers, and others to share stories that help to increase awareness and end the stigma of Alzheimer’s disease. It can also be a turning point for people who choose to become a community advocate.
Advocating for Adults with Alzheimer’s
Why should I advocate for the disease that I dislike and prefer not to think about?
A number of benefits can result from advocating for Alzheimer’s disease—whether you’re an early stage patient, a family member or friend.
- Establishing connections with other people, resources, and support systems
- Reducing the loneliness factor that is so common with the disease
- Providing opportunities to share your insights, experience and hope
- Enabling you to contribute to medical research
How can I fit community advocacy into my schedule?
- Start simple and set small goals. Caring for a loved one can take a huge amount of time and emotional energy, so set small goals. Even one hour a week might help you feel as if you are contributing.
- Reframe your viewpoint. Change your it’s-a-drain attitude to it’s-a-gain Your support and advocacy may actually recharge your batteries because you will be having meaningful conversations with other adults who have similar concerns and problems.
How can I start advocating in my community?
- Begin by talking about Alzheimer’s with coworkers, friends, church members, and others. That may provide a sense of satisfaction and social purpose.
- Read the facts and statistics about the disease. This will help you speak comfortably and knowledgably about the issues.
- Get involved with the local chapter of the Alzheimer’s Association. You’ll meet people, find camaraderie, be inspired, and have an opportunity to participate in activities that increase empathy, self-esteem and self-care. All of this may help to heal some of the emotional wounds caused by Alzheimer’s.
- Use social media to connect with people from the comfort of your home.
- Brainstorm ways to increase attention about Alzheimer’s and other memory problems. Consider arranging a presentation at the local library or organizing regular meetings at a coffee shop.
- Connect with local politicians and learn about their position on medical research funding for Alzheimer’s. Encourage them to back bills and laws that increase financial support for the disease.
- Invite health care providers who specialize in Alzheimer’s to speak at local events and chamber meetings. Broaden the topic of the meeting to include other memory disorders and provide tip sheets, brain-healthy menus, and resource lists.
- Create newsworthy articles for your local media. Include your personal story along with seasonal topics, such as holiday planning or Alzheimer’s-friendly activities.
- Engage the help of business faculty members at a local college or SCORE counselors to solidify or strengthen your community action plans.
- Identify assets and financial resources for your advocacy work.
At Heritage Senior Communities, our staff members receive specialty training to help them provide the best possible care for residents with Alzheimer’s. Each team member in our memory care is an expert and an advocate.
Ask about having one of our dementia care experts speak at your local advocacy meeting or for resources that you can share with the other families.
Behind every medical advancement in the modern world, you’ll find a series of clinical trials. And who’s behind these clinical trials? Regular folks like you. Thanks to the efforts of countless volunteers over the years, researchers have made regular improvements in healthcare by finding new ways to detect, prevent, and treat diseases. This includes Alzheimer’s clinical trials.
If you’ve decided to become a volunteer for a clinical trial in Michigan or would like a senior you love to participate in one, this information will help guide you through the process.
Alzheimer’s Clinical Trial
The most common way of looking for a certain type of trial (Alzheimer’s) in a certain location (Michigan) is to use an online search tool. Most of the registries available for searching clinical trials ask you to use a search box or choose from a drop-down list of parameters to find the kind of trial you’re looking for.
If you don’t see an option to choose the State of Michigan, try selecting “Advanced Search”. In many search forms, this brings up a whole new set of parameters to use for narrowing down your search results.
Here are the top sites to use in your search for an Alzheimer’s clinical trial.
The Alzheimer’s Disease Education and Referral Center
The National Institute on Aging, a federal agency that falls under the jurisdiction of the U.S. Department of Health and Human Services, has a handy search tool on their website.
You can use it to search for Michigan-based clinical trials and studies on Alzheimer’s, as well as other types of dementia. They also include caregiving trials in their database so Michigan residents who care for a loved one may find studies and trials for themselves, too.
The tool is maintained by The Alzheimer’s Disease Education and Referral Center, which also provides useful information about the generalities of volunteering for trials. This includes guidance such as what to expect and how volunteering is tied to leaving a legacy. The information is presented in video format on the YouTube channel of the National Institute of Aging.
Alzheimer’s Association’s TrialMatch®
The Alzheimer’s Association is a not-for-profit organization that runs a matching service called TrialMatch®. It is free and open to individuals with Alzheimer’s, their caregivers, and healthy individuals who simply want to help out by volunteering.
You will, however, need to create an online account and then complete a questionnaire. Then, the organization creates a profile for you, logs it into their database, and attempts to match you with a trial in Michigan. They notify you when a match is found.
The National Institutes of Health (NIH)
Like the National Institute on Aging, NIH operates under the wing of the U.S. Department of Health & Human Services. They too offer a database that can be used to find clinical Alzheimer’s trials in Michigan.
You can search the Clinical Trials Database which currently lists roughly 238,000 studies in all 50 states. It covers all types of international trials, not just Alzheimer’s-related research.
Once you’ve found a suitable trial that’s located in Michigan, your next step will be to find out who’s eligible to participate. Look for the “Protocol” section of the trial description for that information. They’ll also give details about procedures, as well as how long the study lasts and what type of data will be collected from participants.
Your search doesn’t end here, but this is enough to get you started in your quest to find a suitable trial that takes place in Michigan. Want to see what past clinical trials have discovered about Alzheimer’s? Here’s one on meditation and Alzheimer’s.
Is a senior you love acting differently? Maybe an easy going parent has become more irritable and unpredictable? Or has an always upbeat grandparent withdrawn from favorite pastimes and hobbies?
A change in personality, such as increased anxiety, irritability, and depression can all be early signs of Alzheimer’s disease.
Personality Changes to Look for in a Senior Loved One
A senior may be easily distracted or confused in the earliest stages of Alzheimer’s disease. For this reason, they may become upset at even simple changes in routine. Or they may withdraw from social networks because they know something is wrong and hope to prevent others from noticing.
On the other hand, a loss of judgment is also common in early Alzheimer’s. It can cause a typically reserved senior to become outgoing and gregarious. They may even act inappropriately and say tactless things because they lose their ability to tell the difference.
Most times, you will notice other changes as well. Common signs of early Alzheimer’s might include:
- Difficulty maintaining a conversation
- Forgetting familiar names, places, or faces
- Forgetting events and appointments and not recalling them later
- Repeating themselves or asking the same question multiple times
- Habitually misplacing items
Exploring Other Causes for Changes in a Senior
Before you jump to the conclusion that a senior you love has Alzheimer’s disease, know that there may be other explanations for the changes you see.
Causes of Depression and Irritability
Depression and irritability can both be caused by aging-related losses. Maybe your senior loved one recently had a close companion relocate to be nearer to their children. Or perhaps they are dealing with health conditions that make it more difficult to participate in hobbies and interests they’ve always enjoyed.
Personality Changes Caused by Medication
Another source for a personality change in a senior might be a medication side effect or interaction. Review your aging loved one’s medications with their pharmacist or physician. Ask if any of them might be creating the problem.
Infection or Thyroid Disease
There are also a variety of health conditions that closely mimic Alzheimer’s. A urinary tract infection (UTI) and thyroid disease are two of the most common ones. Share your concerns with their physician who may want to order blood work to make the determination.
Talk with a Physician or Health Professional about a Memory Screening
If you want to explore the issue further but your senior loved one is reluctant to see their physician, a memory screening might be the answer. It is a non-threatening way to investigate the problem. While it can’t provide a definitive diagnose, it is 80 to 90 percent accurate in detecting memory-related issues.
Dementia is an illness that slowly robs people of their abilities. For families, it is difficult to witness a person you know and love start to slip away into the grips of Alzheimer’s disease.
What can you do to help protect your loved one’s dignity when they can’t do it for themselves?
Here are five tips you can use to help your senior maintain his or her dignity and quality of life.
Promoting Dignity for People with Alzheimer’s
- Make your senior loved one feel valued. Your loved one might not respond to or even understand the words “I love you” any more, but that doesn’t mean you should stop saying it. Now more than ever, your aging family member needs you and needs to feel that he or she still has your love and affection. Many people with dementia, especially those in the early stages of their disease, still have moments of clarity and awareness. Those moments might be fleeting, but how wonderful for them to know they are loved during those times.
- Help your family member feel safe. Older adults with Alzheimer’s and dementia sometimes experience hallucinations. It can leave them feeling scared or otherwise uncomfortable. Be sure to hold their hand when they feel frightened, or go ahead and take a look into that shadowy corner to confirm there’s nothing sinister waiting for them. You might feel a bit silly, but think of how much better you’ll make them feel by your small actions.
- Continue to celebrate your loved one’s life. It’s easy to forget someone’s birthday when even he or she can’t remember what day it is. But that doesn’t mean that you should neglect to celebrate birthdays, holidays, and other milestones in life. In fact, it’s important for you and your loved ones to celebrate the earlier, happier memories of their lives.
- Maintain their quality of life. Alzheimer’s and dementia can cause people to become more and more withdrawn. That doesn’t mean you should remove all of the trappings of their former lives. Keep artwork on the walls, particularly family photographs. It may help to use older photographs that your loved one might be more likely to recognize.
- Make decisions with their best interests in mind. When you are caring for a loved one who has Alzheimer’s or dementia, it is tempting to make decisions based on your own convenience. And while it’s important to maintain your own quality life as a hardworking caregiver, you should also keep your senior loved one’s best interests in mind. Whether it’s deciding upon an assisted living community with memory care or interviewing health care professionals to work with him or her on a regular basis, focus on what is best for them.
It can be difficult to remain optimistic in the face of a battle like Alzheimer’s disease or dementia. However, when you witness your loved one living with dignity, it can make a big difference in how well you feel about the job you are doing as a caregiver. We hope these tips help!
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