Guest post written by Sidnee Peck. One of the greatest challenges with dementia and taking action related to it is the extreme denial that occurs with essentially everyone involved. Like anything important that needs to be addressed, working through the denial and getting to a place of acceptance is very important.
This allows for proper discussions to be had and care plans to be made with the involvement of the person with dementia. As icing on the cake, once you accept what is before you, you can start to find joy in moments that would have otherwise been incredibly frustrating and painful (it sounds impossible, I know, but just trust me).
First and foremost, there is denial experienced by the loved one noticing symptoms of dementia. In every single case of dementia I have seen, including my own experience with my father, the loved one experiencing symptoms was in complete denial, taking obvious action to hide the symptoms.
This is understandable for two core reasons.
First, admitting you have symptoms or signs of a disease makes it real. And once it is real, it feels like it becomes a part of who you are and begins to define you, to be the first thing people see.
Secondly, it means you have to start giving up control of parts of your life, and eventually know that you will be in a place where you will not know what is going on around you.
Could you think of anything scarier?
The next layer of denial comes from close friends and family of the loved one with dementia. This aspect of denial is challenging because there are a lot of complicated players and influences involved, including: misdiagnosis or lack of diagnosis by a medical professional you trust, lack of understanding of the group of diseases under the dementia “umbrella,” and a feeling of helplessness or confusion about what to do next.
So how can we get through this denial and get to a place where helpful, positive actions can be taken?
It takes persistence wrapped in great love and patience for you and your loved one.
First, set aside some time to have a moment to process this yourself. If this is your parent or spouse, it can be incredibly hard to admit that something is wrong and you may be searching for alternative explanations for the behaviors you’re seeing.
I like this video to help understand the early signs of dementia and to give your mind some ease to know you’re not imagining things.
I would also get a copy of A Dignified Life: The Best Friends Approach to Alzheimer’s Care, by Virginia Bell and David Troxel.
This is a book I read much too late in the process with my dad and I wish I would have read it sooner.
It does name Alzheimer’s disease specifically, but is applicable to all types of dementia in the approach it recommends.
It will completely shift your mindset and I promise it is worth the read.
Then, I recommend a real heart-to-heart with a doctor. You need the medical professional to understand your concerns and give proper attention to a diagnosis. Sadly, many general practitioners and even neurologists are not as familiar with dementia as you’d think. Some individuals can “pass” the basic mental assessments but still have signs of dementia that someone who is looking for it can see. If you feel like you’re not getting the expertise or attention you need, see another doctor.
This part is important because medication and other preventative activities can be prescribed to extend good quality of life, and often this diagnosis from a professional will get your loved one closer to acceptance. My personal work involves therapies that both prevent and treat cognitive decline related to dementia through challenging brain exercises, and I have seen first hand the impact that preventative therapies can have on someone in the very early stages. And even for you, someone not experiencing symptoms but actively preventing symptoms in the future.
You can learn more about our program and get involved by following this link to Brain U, here.
Your Loved One
Third, you should start having the first of what will be many hard and sad conversations with your loved one. Lead with love and let them know that you are there for them no matter what. This is not a time to be right, this is a time to be a “best friend.”
I cannot sugarcoat this one: this part sucks.
This part is going to be very, very painful.
Your loved one may react in a very angry way.
Remember, they are incredibly scared and confused, just like you.
Their anger is not at you, but at the way the disease is making them feel. They may say things that don’t make sense or accuse you of stealing from them or trying to manipulate them. This is just a part of the disease. Remain calm and remind yourself daily, they are not in their right mind. When you feel it’s right, suggest some of the steps outlined here (see a doctor, start a therapy, join a group).
It may take months, but they will start to open up to the ideas you are suggesting. Offer a hug and attempt laughter at the end of each of these conversations. It won’t always work, but sometimes it will bring a little peace and you can bond over going through this together. As you move forward, work to keep their mind occupied with tasks and things they love, like going for walks, going to a baseball game, helping with the chores or cooking.
Finally, I would get into a support group as soon as possible, and if there is a support group in your area for your loved one with dementia, start planting that idea into his/her mind to warm her up to it. I think that the single most powerful thing my mom (now a full time caregiver for my dad) did in this process was to start attending a monthly support group.
She has learned volumes about the legal, medical, and practical daily aspects of caring for a loved one with dementia. You can explore local groups through the chapter of Alzheimer’s Association in your state and a Google search may reveal groups from other organizations, like Banner Alzheimer’s Institute here in Phoenix.
Don’t worry about the term “Alzheimer’s” if your loved one has another form of dementia – there are significant similarities when it comes to the whole care process that while medical treatment may differ, care approaches can be similar.
There can be so much joy and beauty in the journey ahead if you can get to a place where you understand what to expect as it unfolds. This is not easy, but you’ll get there. I wish you peace and acceptance.
About the Author
Ms. Peck is the CEO of SMART Brain Aging, Inc. a healthcare technology company providing online and in person brain training programs to prevent and treat early memory loss and cognitive decline related to dementia. She is also an instructor of entrepreneurship at the W. P. Carey School of Business at Arizona State University where she launched the Center for Entrepreneurship in 2014. Peck’s father was diagnosed with young-onset dementia in his fifties and her mother is a full-time caregiver. Peck lives in Phoenix, Arizona and is devoted to innovation related to aging in many ways, currently serving as the Ambassador for the Aging 2.0 Local chapter and working to build a community ready to embrace the beauty in aging. You can follow Sidnee Peck on Twitter and LinkedIn. You can follow Smart Brain Aging on Twitter.