Planning for the future after an Alzheimer’s disease diagnosis

If you or a loved one have been diagnosed with Alzheimer’s disease, it can be difficult to know how to proceed. What do you do first? What can you do to stay in control of your life and of your future? What can you do to prepare for the changes and challenges ahead?

Having a thorough understanding of the illness will help you manage and plan for these changes. Taking the necessary steps to ensure your or your loved one’s health and well-being is critical. There are several strategies that can help:

Learn all you can about the diagnosis

Alzheimer’s is a degenerative, progressive brain disease that affects memory, thinking and behavior. Alzheimer’s is the most common cause of dementia, accounting for between 60% and 70% of dementia cases. One in three seniors dies with Alzheimer’s or another dementia. It is one of the major causes of disability and dependency among older adults.

There is no cure for Alzheimer’s disease. But there are medications that can help treat the symptoms. Medical advancements are constantly being made, so staying up to date on the latest news and treatments can help manage the condition.

Look for information from recognized sources. The Alzheimer’s Association, the Alzheimer’s Foundation of America, the National Institute on Aging (NIA), and the UK Sanders-Brown Center on Aging  are good places to start. Being informed will help you know what to expect as the disease progresses.

Get your allies in order

• Medical team: Keep your regular appointments with your primary care doctor or ask for a referral for a doctor who specializes in Alzheimer’s and can provide comprehensive care. 
• Family and friends: There will be a wide range of reactions as you tell your family and friends about the diagnosis. Relationships may change. Some will not know how to deal with your news and pull away. For those who are there to support you, be honest with them and let them know what you need. These are the folks you can rely on to provide the day-to-day assistance. Discuss your long-term care plans, continued health care plans and end-of-life care plans with them. Sadly, there can be a stigma surrounding dementia. This comes from a lack of understanding and inaccurate information. The best way to fight this is to encourage your family and friends to learn more about Alzheimer’s.
• Legal team: Talk with an elder law attorney to help organize your financial and legal matters. Creating a care plan will ensure your wishes will be honored. Getting your legal documents in order will make it possible for a trusted family member or friend to make decisions on your behalf when you are no longer able to do so.

         These documents include:

• Power of attorney (both financial and health care)
• Advanced directive/living will — a document that outlines your health care wishes for end-of-life and what, if any, life-sustaining treatments you want
• Standard will
• Living trust
• Support group: Finding a support group can provide both social and emotional benefits. It gives you a chance to talk with others and a place where you can openly share your feelings and frustrations and learn about community services and resources.
• Community resources: Research what community resources are available. These community supports can allow you to live a more active and engaged life and can help with the challenges faced by the caregiver. Age Friendly Lexington, the Alzheimer’s Association, the Bluegrass Aging and Disability Resource Center, Bluegrass Care Navigators, ITN Bluegrass Transportation and the UK Sanders-Brown Center on Aging, along with the many adult day programs and in-home care/companion agencies, can provide the help needed.

Be safe

As behaviors and abilities change, it is good to re-evaluate home safety. Talk with your doctor about a home safety evaluation, which can be conducted by a local home health agency (this may be covered by Medicare). This process could include installing grab bars in the bathrooms, adding lighting to dark hallways and stairs, removing throw rugs, rearranging furniture, and de-cluttering pathways.

• Consider wearing an ID bracelet, a medic alert pendant/bracelet or other technology aids, such as a smart watch, to ensure that help is available when needed.
• Use simple "memory aids" such as sticky notes or laminated sheets of paper reminding you of things you need to do regularly and a journal or calendar reminding you of upcoming appointments.
• Use a medication reminder box to help keep medications organized and taken as prescribed. Some medication boxes can be set to remind you when to take your medication with an alarm, vibration or flashing light.
• Driving requires clear thinking, alertness and good decision-making skills. As the disease progresses, memory, judgement and reaction time worsen. The National Institute on Aging suggests those in the beginning stages (mild Alzheimer’s) may still be able to drive safely in certain conditions. Having a driving evaluation can help determine if you are safe to get behind the wheel. Anyone with moderate to severe Alzheimer’s should never drive.

*Driver evaluation program in Bluegrass area - Commonwealth Driving Rehabilitation – 859-351-6612 (this is not covered by Medicare).
 
Stay healthy

Making simple changes can improve your brain health and help you maintain your independence longer. Prioritizing self-care is important.
 
What is good for the heart is good for the brain. Keeping your heart healthy also keeps your brain healthy. Monitor your blood pressure and cholesterol, keep diabetes under control, quit smoking, limit alcohol, stay social, maintain a healthy weight by exercising regularly and eating a healthy diet, and learn how to manage stress – I know, easier said than done. But there are folks who can help — check out the UK HR work-life and well-being page.   
 
There is no right or wrong way to feel or react when you learn the news. Everyone will respond differently. Give yourself time to work through the difficult emotions. Coping with the realities of dementia can make it hard to think beyond the day-to-day stuff. Becoming educated about Alzheimer’s disease, rallying your allies, getting your legal and financial matters in order, ensuring a safe environment and prioritizing self-care are all important steps in managing this disease effectively and providing you a sense of control and empowerment.
 
Stay well, stay healthy, stay connected, 
Terri