All of us involved with the Early Onset Alzheimer’s Disease Resource felt it was imperative to share the valuable lessons we have learned along the way. Our group wanted to impart information and insight that we wish we had as we begun the journey with our loved ones. We have attempted to organize our tips and lessons learned by category.
If there is a question, sign up for long term care and disability plans before diagnosis.
Hindsight is always 20/20-right? A common theme that arises in all of conversations is that we wished our affected loved one’s financial affairs were in order prior to diagnosis, particularly long term care and disability insurance policies. Many people receive these benefits through work but these policies are available through supplemental insurance companies.
Even when all of the insurance policies are in place, be prepared for the insurers to try to declare the policies invalid for any reason. One family had their loved one’s long term care policy denied because she put the wrong date for dental surgery in the initial application.
Speaking of Long Term Care Policies
As children of parents with Young Onset Alzheimer’s, many of us have decided to apply for long term care policies now. Some of us have been successful in getting the policies while some of us have been turned down.
Getting a long-term care policy for the primary care giver to be very helpful to the family unit. Being a caregiver for an Alzheimer’s patient is emotionally and financial depleting. Most primary caregivers of Young Onset patients have to give up their employment and benefits. So putting a policy in place to ensure that the caregiver is provided for in the future is critical to the well being of the unit.
Fighting for the Right Diagnosis
Perhaps the most frustrating part of Early Onset Alzheimer’s is how difficult is for the affected person to receive the correct diagnosis. As a family member, friend, or colleague who knows that something is wrong along with that person, you play a critical role in fighting for the Right Diagnosis.
• Before heading to the doctor for the initial visit, Interview family members, friends and colleagues to create a picture of symptoms for the physician. Send the information in before the appointment so the doctors and nurses can review ahead of time. We knew that discussing what we noticed in front of our loved one would have been very scary and he or she may have denied the facts. We found this strategy to be very helpful to diagnosis.
• The diagnosis will likely come after ruling other causes. The process takes and a lot coordination between various doctors, test results and coordination. There will be blood tests, psychological testing and possible imaging like an MRI.
• You are critical to pushing the process along. As soon as one condition is ruled out, then moved on to the next. You really have to push along the diagnosis. This also includes pushing along the paperwork for all of the benefits plans.
• Find an expert. We went with the NIH-recognized center in our area. They were/are fantastic. No one is looking for Alzheimer’s in a 40 or 50 year old.
Alzheimer’s is not a disease like cancer which requires lots of doctor’s appointments for ongoing maintenance. Expect perhaps only two visits per year. It is critical to have family members and/or friends attend the doctor’s appointments to ensure all of the information is captured.
• Be sure that a family member or friend attends other doctor’s appointments as well. Visits to the heart doctor, gastroenterologist or ob-gyn can be confusing and taxing. You can call ahead to let them know that that your loved one has Alzheimer’s, but that information gets lost in the process—so the medical secretaries, the nurses and doctors may not know.
• You have to constantly educate and advocate for your loved one because even trained health care professionals do not always get it. One family tells the story of their loved one going to a facility designated by the disability insurer to confirm the disability. Despite repeatedly telling the staff of their brother’s diagnosis of Young Onset Alzheimer’s, the facility insisted on in-depth occupational testing and psychological testing. After three hours, a family member stormed the back office to grab a doctor to explain the diagnosis. The doctor finally understood and immediately stopped the usual barrage of testing and approved the disability.
• Sharing medical information and tips among family members is important. One family used Google Notes to keep family members up to date on what happened at the various doctor’s appointments.
Alzheimer’s changes everyone – emotionally and physically. With Young Onset Alzheimer’s, those changes stand out in stark contrast to the young age.
• If your loved one is still able, have as many of those bucket list conversations that you can and document it. One daughter looked back and wished she had just asked, “What does this disease feel like in your brain?” Another family member wished that she had recorded her mother’s voice when they had conversations before her mother’s speech changed and then ultimately disappeared.
• Take pictures now. Alzheimer’s will change your loved one’s appearance. Maximize the opportunity to take pics now, while he/she is as you want to remember them.
• Have fun. Find things you can still do with your loved one (dance, walk, etc.) and do it every chance you get.
Smart Phones and Tablets
Today our family members are entrenched in their phones and tablets. They keep us connected and are an important to tool to keep a loved with young onset engaged.
• Keep the existing software platforms that your loved one uses now. Do Not Update the software—too many small things change.
• Only keep the most basic programs and apps on the phone, making them obvious to use.
• Simplify interface. One family reached out to Android and the company let the replace the user interface with the most basic and simple interface.
• Use the calendar to set automatic reminders for your loved one from lunches with friends, birthdays and doctor’s appointments.
• Set up automatic Facebook feeds from friends and families so that pictures and messages are streamed rather than having to logged on to Facebook to retrieve them. One family found that automatic Facebook feeds really kept their loved one engaged. He was much better at responding to items than being proactive and logging onto to Facebook.
• Set up access to your loved one’s contacts, calenders, and emails. If you set up the program so that you get copies of the emails, it’s much easier to help your loved one keep up with appointments.
End of Life Issues
Discussing end of life issues with someone who is young is painful. If your family member is early enough in the disease, think about having the tough conversations surrounding end of life decision making. Some families found the book Hard Choices for Loving People (available for free online) very helpful.
• Discuss now the caregiving plan, including spouses, siblings, extended family and friends
• Talk about where everyone envisions care taking place (home, assisted living, etc.)
• Recognize that everyone may have to be flexible
• Execute living wills, POLST documents, Durable Power of Attorney for Healthcare and Durable Power of Attorney for finances. (many of these forms are available online)
• Make sure you set the second in command, should the primary person responsible no longer be able to execute said wishes