Bruce Willis' wife Emma Heming has opened up on her husband's battle with dementia following his diagnosis. Willis had initially been struggling with aphasia, a condition that affects the ability to communicate.
In a piece featured in Maria Shriver's Sunday Paper, model and health advocate Heming shared her experiences of both the joys and struggles following the Die Hard star's diagnosis. Heming, 45, married Willis in 2009 and they share two daughters together.
She explained: "I struggle with guilt, knowing that I have resources that others don't. When I'm able to get out for a hike to clear my head, it's not lost on me that not all care partners can do that."
"When what I share about our family's journey gets press attention, I know that there are many thousands of untold, unheard stories, each of them deserving of compassion and concern."
She added that when she listens to other families impacted by frontotemporal dementia (FTD) "I hear our family's same story of grief, loss, and immense sadness echoed in theirs." She added: "It's important to me to be an advocate on behalf of those families who don't have the time, energy, or resources to advocate for themselves."
Heming also said she feels more hopeful now than she did when Willis was first diagnosed, admitting to understanding the disease more now and is "connected to an incredible community of support." She went on: "I have hope in having found a new purpose — admittedly one I never would have gone looking for — using the spotlight to help and empower others.
"And I have hope in how our entire family can find joy in the small things, and in coming together to celebrate all the moments life has to offer." FTD is a group of disorders caused by progressive nerve cell loss in the brain's frontal lobes and is characterised by changes in personality, behaviour and language due to brain degeneration.
The group of disorders typically occurs at a younger age than Alzheimer's disease, often between the ages of 40 and 65. According to the NHS, signs of frontotemporal dementia can include:
- personality and behaviour changes – acting inappropriately or impulsively, appearing selfish or unsympathetic, neglecting personal hygiene, overeating, or loss of motivation
- language problems – speaking slowly, struggling to make the right sounds when saying a word, getting words in the wrong order, or using words incorrectly
- problems with mental abilities – getting distracted easily, struggling with planning and organisation
- memory problems – these only tend to occur later on, unlike more common forms of dementia, such as Alzheimer's disease
There may also be physical problems, such as slow or stiff movements, loss of bladder or bowel control (usually not until later on), muscle weakness or difficulty swallowing. These problems can make daily activities increasingly difficult, and the person may eventually be unable to look after themselves.
