“In the spirit of that, we wanted to give you an update about our beloved husband, father and friend since we now have a deeper understanding of what he is experiencing.
“Since we announced Bruce’s diagnosis of aphasia in spring 2022, Bruce’s condition has progressed and we now have a more specific diagnosis: frontotemporal dementia (known as FTD).
“Unfortunately, challenges with communication are just one symptom of the disease Bruce faces. While this is painful, it is a relief to finally have a clear diagnosis.
“FTD is a cruel disease that many of us have never heard of and can strike anyone. For people under 60, FTD is the most common form of dementia, and because getting the diagnosis can take years, FTD is likely much more prevalent than we know.”
The statement continued, “Today there are no treatments for the disease, a reality that we hope can change in the years ahead. As Bruce’s condition advances, we hope that any media attention can be focused on shining a light on this disease that needs far more awareness and research.
“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.”
The statement went on to urge others to read more about the disease and about the support available.
“Bruce has always found joy in life – and has helped everyone he knows to do the same. It has meant the world to see that sense of care echoed back to him and to all of us,” the message concluded, signed by Heming, Moore, and Willis’ daughters Rumer, Scout, Tallulah, Mabel and Evelyn.
FTD affects the brain lobes behind the forehead, which control problem-solving, behaviour, planning and emotions. It’s a rare type of the disease, forming less than 5 per cent of total dementia cases - but it’s one of the most common forms of dementia in those under 65.
Its rate of progression can vary, with life expectancy between two and 10 years after diagnosis.