Tim Tholen, CEO and Founder of Thoughtful Health Care and its affiliates in Kansas City hosted experts  Michelle Niedens, Licensed Social Worker, and the director of My Alliance for Cognitive Health, a community-based program focused on early detection, provider partnerships, and education and Eric Vidoni, PT, PhD, Director of the Outreach, Recruitment and Education Core for the University of Kansas Alzheimer’s Disease Center and a Research Associate Professor in the Department of Neurology at the University of Kansas Medical Center. ​

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Being a caregiver of someone who requires 24/7 care is tough under any circumstances. Add in dealing with confusion, aggression, sundowning, wandering, and all the other behaviors that go along with Alzheimer’s disease, and it’s not a wonder why as an Alzheimer’s caregiver, you may be sleep deprived.

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Caring for someone with Alzheimer’s is a 24/7 job. It’s also both physically and emotionally demanding. So it’s no wonder that Alzheimer’s caregivers frequently find themselves stressed. And many caregivers end up neglecting their own health by not getting enough sleep, proper nutrition, exercise, and down time. Here are some things you can do to manage Alzheimer’s caregiver stress:

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Repetitive behaviors (e.g., doing or saying the same thing over and over) are common in people who have Alzheimer’s or other form of dementia. Some repetition can be attributed to short-term memory loss (i.e., the person simply can’t remember what he or she just did or said). Other causes may include anxiety, frustration, insecurity, or an attempt to communicate a specific need or thought.

Whatever the cause, repetition can be annoying and/or frustrating for Kansas City Alzheimer’s caregivers. Here are some things you can do that may stop repetitive behaviors:

  • Look for a cause. Is there a specific need that isn’t being met? Does the person with Alzheimer’s need to go to the bathroom? Is he or she in pain? Is there too much noise? Is the person trying to tell you something?
  • Stay calm. If you’re caring for someone with Alzheimer’s, you need to be a good listener. And it requires patience. Getting upset about repetitive behaviors is only going to aggravate the person more, which could exacerbate the repetitive behavior.
  • Be creative. One evening, my mom kept asking for my dad, who was in the room with her in their Kansas City home. She thought my dad was another guy she’d dated in college, and we didn’t know how to convince her otherwise. So he walked around the block. As he was coming back down the street, my brother-in-law looked out the window and said, “Here he comes now.” When my dad walked in the door, my mom scolded him for not telling her where he was going. He apologized, and that was that.
  • Use reminders. If the person who has Alzheimer’s repeatedly asks the same questions, write down the answers and put them where they can be easily seen.
  • Try distraction. If you can’t find the cause of the person’s repetitive behavior, try engaging him or her in another activity.
  • Answer questions. If the person who has dementia is repeatedly asking the same question, keep answering. But be mindful of the things you shouldn’t say to someone with Alzheimer’s.
  • Get help. If you need help with Alzheimer’s home care, or just need some temporary respite, you may want to enlist the help of a Kansas City home care agency that specializes in Alzheimer’s and dementia care.

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Communication is difficult for people who have Alzheimer’s disease or other form of dementia. It’s also not easy for someone who doesn’t have Alzheimer’s to communicate with someone who does. Here are some tips that might help improve communication between people with dementia and their friends and family members and/or caregivers.

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If you’re diagnosed with Alzheimer’s while in your 30s, 40s or 50s, you’ll likely be faced with a lot more challenges than your older counterparts.

For example, people with younger-onset Alzheimer’s, also known as early-onset Alzheimer’s, are more likely to:

  • be gainfully employed at the time of diagnosis
  • still be raising children
  • still have significant debt (e.g., mortgage, car payments)
  • be more reluctant to accept their limitations

Here are some things you can do to prepare yourself for life with early-onset Alzheimer’s:

Tap Kansas City Alzheimer’s Resources

Kansas City has a multitude of Alzheimer’s resources that will help you find appropriate healthcare, Alzheimer’s information, Alzheimer’s home care, support groups, and more.

Tackle Career Issues

If you’d like to continue working, you may want to consider sharing your diagnosis with your direct supervisor. See if there are options available that will allow you to work shorter hours, adapt your job responsibilities, and/or switch to a job that will better suit your abilities.

While you’re still working, you’ll want to visit your human resources department and review your benefits. In particular, ask about:

  • An Employee Assistance Program
  • The Americans with Disabilities Act
  • The Family and Medical Leave Act
  • Short-term disability
  • Long-term disability
  • Early retirement benefits (if you’re close to retirement age)
  • Continuing life insurance benefits in the event you should stop working
  • COBRA

Address Changing Family Dynamics

As your disease progresses, you and your spouse may no longer be able to be equal partners in raising your children. Your relationship with your spouse will also change. Here are some things to consider:

  • Let your spouse and your children know that you have younger-onset Alzheimer’s. You may also want to periodically give your family an update on any disease progression.
  • When reasonable, allow children to participate in major decision making.
  • Talk to your spouse about future child-rearing responsibilities
  • Discuss things that you and your spouse may still be able to do as a couple.
  • Find new activities you can all still do together as a family.

Manage Legal Matters

Talk to a financial counselor and an attorney about current and future financial needs. Some things you may want to discuss include:

  • Developing a will, if you don’t currently have one
  • Designating a power of attorney to make decisions on your behalf when you’re no longer able
  • Signing a living will to let healthcare workers know your wishes in the event you’re not able to make a decision at the time of care
  • Designating a healthcare power of attorney to make healthcare decisions for you when you’re no longer able

Make sure your spouse or next of kin knows how to take care of the family finances and has copies of all of these documents and your life insurance policy.

Maintain Independence

Just because you’ve been diagnosed with younger-onset Alzheimer’s doesn’t mean you can’t still maintain some sense of independence. Here are some things you can do:

  • Take care of yourself. Eat a healthy diet, exercise regularly, and follow your doctor’s orders.
  • Make your home safe. People with dementia need to take additional safety measures.
  • Use technology. Vast improvements in apps and other technology over the last several years can help you maintain some independence.
  • Find transportation. You’ll want to continue participating in activities you still enjoy for as long as you’re able, but it may not be safe for you to drive. So you’ll want to look for alternative transportation methods (e.g., friends, relatives).
  • Get help. A part of maintaining your independence is knowing when you need help. A good Kansas City home care agency that specializes in Alzheimer’s and dementia can help you with things like bathing and grooming, meal preparation, light housekeeping, transportation, and more.

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