More than 15 million Americans have assumed the role of a caregiver for a family member or loved one with Alzheimer's disease. This role is a difficult one that comes with the demands of constant changes and very difficult decision-making. It also requires you to learn many new skills and continuously adapt along the way. Rarely a day goes by when I don't get unexpected questions from caregivers about how to provide the best care.
After the onset of Alzheimer's, the person you love is constantly changing as they progress further in the illness. As caregivers, we have a responsibility to change along with our loved ones--adjusting our expectations of the person, as well as learning how to communicate with and care for them.
In the early stages of the disease, you will think you are still seeing the same parent, grandparent or spouse in the person you're caring for. But at the point when they just don't understand something very basic, or can't do a specific, simple activity anymore, it will become necessary to adapt, which can be a difficult and painful task.
For example, one caregiver I've worked with found her husband with shaving cream on his face and confusion over how to get it off. She realized she would now have to begin assuming the responsibility of shaving his face and managing other daily tasks, playing a role more similar to his mother than his wife.
As Alzheimer's disease progresses, caregivers inevitably become the decision-makers for the person affected. With this comes substantial fear about making the wrong decisions. In my experience as the Director of Family and Community Services at Banner Alzheimer's Institute, people make good decisions for their loved ones when they are educated about the illness, and are truthful to themselves about their particular situation.
In honor of National Family Caregivers Month this November, I have reflected on the most common questions my team receives, as well as the advice we share with caregivers.
1. How do I tell our family and friends about my loved one's diagnosis with Alzheimer's disease?
Decide who needs to know and how much they need to know. You can talk in generalities, for example: "Mary has a memory loss condition but she is getting great care from her doctor, and we are pleased that she is doing well. We hope that we can count on you to maintain your relationship with her."
2. What stage of Alzheimer's is he/she in and how long will it last?
Every person with dementia is different, so it is difficult to provide an accurate prognosis. We like to explain how the illness progresses (using the stages of mild, moderate and advanced) to eventually affect all aspects of function. However, at any stage, the patient can be reached, respected and empowered. We encourage loved ones to focus on who their person has always been, and introduce things into their environment that support their unique contributions in life. A common rule of thumb is to look back over the past year at the person's rate of change and understand that it will likely be similar in the year to come.
3. How do I know that the medications are working?
This is often confusing to families because despite the medications, the person with dementia is declining. However, we know that these medications are important in slowing the rate of decline of a person's function and can have significant effect on mood as well. We use these medications because we want the person with dementia to remain as independent in life and self-care activities as possible, as it not only reduces the burden on the caregiver, but provides a sense of self for the person living with dementia. However, if a family member feels that it is time to stop the medications, they should do so only under the supervision of the medical provider. That way, if a rapid decline is seen, the medications can be restarted to reduce further decline.
4. How will I know when it is time to: stop driving; get help; move to a facility?
Often, caregivers make decisions only after a crisis--deciding, for example, that their loved one should no longer drive after they get in a car accident or deciding they can't be left alone after they wander away and get lost. This is not the best time to be making decisions. Ideally, caregivers should have conversations with their loved ones about care preferences in the early stages of the disease. However, at a certain point, there will come a time when decisions no longer involve the person you're caring for, because they can't make safe choices for themselves anymore.
5. How will I pay for care?
We recommend that following the diagnosis, families consult with an elder law attorney to plan for how to pay for care and explore additional benefits that may help, such as a private long-term care policy, the Veterans Administration Aid and Attendance Program, and Medicaid. With careful planning and sound advice, it is possible for most people to pay for and receive the care that is required.
I encourage all caregivers to remember that there is no "one-size-fits-all" approach to providing care. Every situation is different in regards to the impact of the illness on the person, the financial situation, family dynamics, etc. Accept that you will make mistakes. This is a very exhausting disease and often what worked yesterday will not work today, or tomorrow, or the next day. Forgive yourself! Control what you can control and let go of the rest. You didn't ask for this situation, but you are here and stepping up to care for your loved one. That is an amazing undertaking!
If you want to learn more about what you can do to help end Alzheimer's disease, visit the Alzheimer's Prevention Registry. The Registry is an online community of people like you who have experienced the devastating effects of Alzheimer's disease and want to help push prevention research forward. Members are sent updates about Alzheimer's news, prevention studies happening in their area, and information on overall brain health. Please consider joining us today.
Thank you for all you do!