by Ian Witterick

A dementia diagnosis turns your life upside down and inside out. This a common sentiment expressed in the conversations I’ve had with others who are also affected by young-onset dementia.

In July 2019, my wife of 32 years was diagnosed with bvFTD at the age of 55. When we received this news, my mind was flooded with questions. “What is going on? What will this mean? Why have I never heard of this disease before?”

As is so often the case, my wife wasn’t able to register her diagnosis. Right on the heels of discovering a new disease, I also learned a new word: anosognosia – the inability to perceive or understand one’s own illness. In some strange way, my wife’s lack of insight has helped as we come to terms with the situation. I’m at home with my wife as a full-time caregiver now, a fact that she seems thankful for.

Something I am thankful for is the support networks I was introduced to on the heels of my wife’s diagnosis. When I first met Nikki of Rare Dementia Support in London, I didn’t fully comprehend how important that introduction would be. Through my connection with Rare Dementia Support, I have gained not only a thorough understanding of my wife’s condition, but also a community of understanding and support, which has been vitally important.

Because of my connection to Rare Dementia Support, I have had the opportunity to meet fellow FTD caregivers, not just here in the UK, but all throughout the world. And it was through one such online meeting, in May 2021, that the seed for an advocacy idea was planted.

I firmly believe that education = empowerment. One way that I’ve found purpose since my wife’s FTD diagnosis is by developing an acronym to help increase awareness of the support and resources that are needed after a dementia diagnosis is delivered.

My hope is that using an acronym to convey my message makes it eye-catching and easy to remember, so that it can be a useful tool for explaining to doctors, professional support teams, family members, and friends what we need most from them as we navigate our FTD journey:

D = Dignity – what we wish to maintain for our loved one who is living with dementia.
E = Empathy – what we hope to receive from doctors, family, and friends.
M = Mentoring – something that we both seek and provide within our support networks.
E = Education & Empowerment – what we gain from our networks of support and advocate for in society.
N = Nurturing – what we need from healthcare providers, family, friends, and support groups.
T = Targeted/Timely – facts and information that are relevant and helpful to our dementia journey.
I = Information – for ourselves and the public that is interesting, insightful and informative.
A = Advice – that is always relevant and sensitive to the unique and difficult journey we find ourselves on.

My support networks have also helped me to explore and understand my own inner landscape in new ways. One such area of discovery has involved delving into my creative side. Prior to becoming my wife’s FTD care partner, I’d never considered myself a creative person. But within those safe, judgment-free spaces of support, I’ve discovered new interests and aspects of myself. For that I will always be grateful.

I would urge all people and families facing an FTD diagnosis to seek out support groups. Take advantage of the wealth of knowledge and opportunities for growth and expansion that can be found within those networks and new relationships. Navigating this FTD journey really is easier, and far less isolating, with a little help from our friends.