What We Can Learn from Bruce Willis and His Family
Bruce Willis and his family brought much needed awareness and interest to frontotemporal dementia and its most common symptom, aphasia, since he first announced his condition in the spring of 2022. Frontotemporal dementia affects an average of 15-22/100,000 population, 60% of which are between the ages of 45 – 64 years old, according to the National Institute on Aging. FTD accounts for about 5-20% of all dementia cases (Alzheimer’s Association).
|“Bruce always believed in using his voice in the world to help others, and to raise awareness about important issues both publicly and privately. We know in our hearts that – if he could today — he would want to respond by bringing global attention and a connectedness with those who are also dealing with this debilitating disease and how it impacts so many individuals and their families. “|
Why We Are Grateful to Bruce Willis and His Family
Bruce Willis and his family remind us that anyone can develop dementia. There is no “immunity” just because you are rich and famous.
Sadly, despite the fact that “dementia” as a medical term has been around for over 200 years and millions of people globally are living with dementia, a lack of understanding, or worse, misconceptions about dementia continue to persist.
According to the Alzheimer Society of Canada’s website, “stigma against dementia encompasses any negative attitude or discriminatory behaviour against people living with dementia, just on the basis of having the disease…Stigma is one of the biggest barriers for people living with dementia to live fully with dignity and respect.”
By publicly coming out with his diagnosis, his whole family’s inspiring attitude and response towards his dementia, helped put a face to people living with dementia and the families who care about them. His celebrity status will hopefully help reduce the stigma surrounding dementia, increase awareness and encourage individuals and/or their families who suspect symptoms of dementia to seek help. This includes getting a diagnosis early by their health practitioners/doctor as well as learning about the services available to support everyone to enjoy good quality of life with dignity and respect.
Understanding Frontotemporal Dementia
Frontotemporal Dementia, also known as frontotemporal disorder (FTD) or young onset dementia is a progressive type of dementia that gets worse over time. The life expectancy for those affected varies, from less than two years to more than ten years after initial diagnosis.
As the disease progresses, more parts of the brain get affected and the patient starts to develop new and more symptoms depending on the part of the brain that is affected.
The frontal lobe is the largest lobe of the brain, and is responsible for the higher level executive functions (e.g., reasoning, problem-solving, planning), movement and language. It is important for family caregivers of individuals living with FTD to understand that since this type of dementia affects this part of the brain responsible for these functions, the changes in behaviour they may observe from their loved one is a result of the damage to the region of the brain affected. Knowing this may help family caregivers draw additional compassion and understanding toward the person, should inappropriate or upsetting behaviours surface.
According to the article “Aphasia” published through Johns Hopkins Medicine, “Aphasia is a language disorder caused by damage in a specific area of the brain [frontal lobe] that controls language expression and comprehension. Aphasia leaves a person unable to communicate effectively with others.”
Aphasia is a symptom of dementia, but it is not synonymous nor is unique with dementia. Aphasia is a symptom common to other conditions like brain tumors, certain infections, a head injury or stroke. Therefore, it is important that a person showing signs of aphasia, to get a correct diagnosis so that timely and appropriate treatment can be initiated. As Willis’ family so effectively articulated, “While this is painful, it is a relief to finally have a clear diagnosis.”
Managing and Communicating with Individuals Affected with Aphasia
There are several ways to manage aphasia, the first of which is consulting with a speech-language pathologist who can assess the type of aphasia, extent of progression and come up with an appropriate management or care plan. Below are some day-to-day suggestions.
- When communicating with someone affected with aphasia, it is important to not make any assumptions on what they can or cannot understand. This means including them in conversations and making an effort to talk to them using simple, clear and direct sentences.
- Try to speak naturally in a conversational manner, while making sure to clearly enunciate the words and supplementing the words with hand gestures, pointing or even using drawing or writing things on paper.
- It’s also important to allow time for the person to respond and communicate back before moving on to the next question.
- Caregivers can also take advantage of devices such as laptop computers or mobile devices to type in words or bring up an image or visual to facilitate communication.
How to Support Someone with Dementia with Dignity and Respect
Supporting someone living with symptoms of dementia with dignity and respect means to not allow their diagnosis define who they are. Instead, we treat them as the person they are and honouring their life achievements.
Bruce Willis is not just a person with aphasia and a diagnosis of frontotemporal dementia. Before making the decision to quit as an actor, he has starred in over 100 films, a dozen tv shows, recorded albums and fathered five beautiful children and is well-loved by his family. Treating him as a person; who is and was, will allow him to continue to feel human.
To honour Bruce and the people that we care for, let’s continue learning and implementing the best ways to support someone affected by aphasia and/or a progressive type of dementia. In the meantime, it appears that Bruce and his family will continue to bring “global attention and a connectedness” for all those affected. In our books, this advocacy deserves a standing ovation.
Karen Tyrell CPCA, CDCP is a Dementia Consultant, Educator, Author & Advocate, and Founder of Personalized Dementia Solutions Inc. (www.DementiaSolutions.ca). Karen offers her expertise on dementia care through speaking engagements, workshops, support groups and by working one-on-one with families and caregivers to provide emotional support and practical solutions. She was also on the design team for The Village Langley and provides ongoing education to the Village team, families and the community. If you require support, please feel free to reach out.
The contents of this blog are provided for information purposes only. They are not intended to replace clinical diagnosis or medical advice from a health professional.