Son Documents the Progress of his Father's Dementia

In 2015, it was estimated that 46.8 million people across the Globe were suffering with dementia. This is predicted to rise to 131.5 million people by 2050.

There are several different types of dementia, such as: Alzheimer’s Disease, Vascular Dementia, Dementia with Lewy Bodies, Frontotemporal Dementia, Posterior Cortical Atrophy and Primary Aggressive Aphasia.

Ken Keene Jr is making a video diary of his father Kenneth Keene Sr as he lives with Frontotemporal dementia, a rare form of dementia, thought to account for less than 5% of dementia cases.

This type of dementia is a tauopathy, so called because mutant forms of the protein ‘tau’ aggregate inside brain cells and cause their destruction. Recently, the structure of the tau protein has been solved, and this will hopefully lead to the better design of much needed diagnostic tools and treatment.

Read more: the structure of tau solved

In this type of dementia, cells in the frontal and temporal lobes of the brain are particularly susceptible to destruction. These areas are located directly behind your forehead and those to the sides of your head. They process speech and language and also give rise to your personality and behavioral characteristics. Sufferers of the condition tend to undergo drastic changes in their personality and behavior. They also have trouble recognizing people they are familiar with, and frequently experience language difficulties. As Ken Jr documents in his videos, his previously reserved father now sings uncontrollably, but also struggles to interpret conversations with new people.

Despite the prevalence of dementia and the increasing burden it places on health services and care institutions, research in to the different conditions is comparatively under-resourced. For example, in the UK, dementia researchers are outnumbered 1:4 by cancer researchers. 

I caught up with Ken Jr to find out more about why he is making this video diary, “The Journey with ToughKenaMan”. As he says below, he wants to raise awareness of this rare form of dementia and to give insight to how it affects not only the sufferer, but their whole family.

AT: Can you tell us more about your Dad?
Ken Jr: My Dad has Frontal Temporal Lobe Dementia. He was diagnosed at the age of 64. He is 68 years old now and has been living in a Veterans senior center since July 2016. He has been married to my Mother, Barbara for 46 years and has three sons; Ken Jr, Brian and Shawn.        

The man my Dad is today is the total opposite of who he was some years ago prior to his diagnosis. He was a disciplinarian, fair, hard-working, tough, quiet, extremely handy, and did everything with great integrity. He wasn't the super affectionate type. He was a man of action and led by setting examples.

Today, my Dad is extremely talkative, outgoing, affectionate, repetitive but is severely limited on comprehending what people, places and things are. His condition has wiped his mind clean of all he used to know and he now struggles to remember who his sons are.

AT: Why are you making this video diary? 
Ken Jr: The primary purpose is to help bring education, motivation, hope, inspiration and laughter to everyone especially those affected by any form of dementia.        

AT: What do you hope to achieve by making this video diary?
Ken Jr: I hope that the spotlight I am putting on my journey with my Father will get the attention of major news media, corporations, military, social media platforms, government, pharmaceutical companies, Universities, hospital and clinical study groups to acknowledge and take action in helping raise funds and using their resources for further study of this debilitating disease.

AT: How have you personally found watching your Dad suffer from this disease?
Ken Jr: I have been struggling with mixed emotions throughout the many different stages of my Father's steady decline over the years. I have experienced tremendous sadness, anger and despair. I have become less enthusiastic about life, short with people, experienced a loss of patience and the feeling of a major void in my heart. Although these are some of the feelings I've experienced, My Father's condition has also helped me in many ways become a better person.

I feel a greater sense of compassion and understanding towards my Father and people in general. My patience has since improved greatly. I live life with a greater sense of purpose and my priorities in life are not what they used to be. I've learned that family, health and the way you treat people are more important and most rewarding in life.

AT: How has your Dad’s dementia impacted on you and your family?
Ken Jr: Each one of my Family members are reacting differently to this situation. We all feel a great loss and are handling this the best way we know how. I can say this much, there seems to be more effort and intensity exerted into our work, hobbies and things in general by each one of us; which I feel comes from the pain felt in our hearts.

AT: Have you received any support from your community?
Ken Jr: As for emotional support, we have been comforting one another and have been utilizing some of the services available through the veterans center where my Father resides. As for raising awareness, the overall support we have received has been minimal in regards to helping us raise awareness and reaching large audiences.

AT: If people take home one message from watching your videos, what do you hope it is?
Ken Jr: That they are not alone and there is hope. Whether near or far there are people in this World living a life similar to those diagnosed or families suffering as a result of their loved ones’ disease. With hope we can survive and provide the best support possible to help those stricken with this disease and become stronger mentally and emotionally as care givers.

AT: Finally, do you have any words of advice to other people suffering from the disease or caring for a loved one who suffers from frontotemporal dementia?
Ken Jr: What I find important in everything in life, especially on this journey with my Father is looking at the Big Picture. If you allow your emotions to take over, the adversity you are facing at that moment will consume you and the worse will come out of you. Practice thinking before speaking, avoid reacting impulsively and flush out the negative thoughts from your mind because at the end of the day there are no challenges we as humans cannot get through... it’s how you go through them.

Ken’s videos can be watched on you tube.