Demi Moore opens up about Bruce Willis's dementia. What to do if your loved one is diagnosed
The actress shared her approach to ex-husband Bruce Willis's diagnosis with dementia
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Demi Moore shared some words of wisdom related to Bruce Willis's health during a press tour to promote her new TV show "Feud: Capote vs. The Swans."
On Tuesday, Moore spoke to Andy Cohen on his SiriusXM show “Radio Andy" about Willis, who was diagnosed with frontotemporal dementia (FTD) last year.
Moore, who was married to Willis from 1987 to 2000, said she encourages family members caring for people with dementia to "meet them where they're at."
“When you let go of who they’ve been or who you think they [were] or who even you would like them to be,” Moore said, “you can then really stay in the present and take in the joy and the love that is present and there for all that they are, not all that they’re not.”
On Wednesday, Moore gave a brief update on Willis to "Good Morning America" saying, "I think, given the givens, he's doing very well."
In addition to his three daughters with Moore, Rumer, Scout and Tallulah, the 68-year-old actor has two daughters, Mabel and Evelyn, with wife Emma Heming Willis.
Last year, the family released a statement announcing Willis's diagnosis with FTD.
"FTD is a cruel disease that many of us have never heard of and can strike anyone," the family said. "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. Today there are no treatments for the disease, a reality that we hope can change in the years ahead."
What is frontotemporal dementia, the disease that Bruce Willis has?
Frontotemporal dementia is an umbrella term for a group of rare disorders that affect the frontal and temporal lobes of the brain — the regions associated with personality, language, movement and behaviour.
Diagnoses of FTD are rare. Researchers estimate cases of frontotemporal dementia make up just 5 to 10 per cent of all dementia cases. However, unlike other forms of dementia, FTD tends to be diagnosed earlier in life. Alzheimer's Disease mainly affects people aged 65 and older, whereas FTD symptoms can present between 40 and 65. When symptoms of dementia start before age 65 (known as young onset dementia), approximately 1 in 5 cases are frontotemporal dementia.
Signs & symptoms of frontotemporal dementia
Symptoms of FTD vary from person to person, depending on the areas of the brain affected.
Damage to nerve cells in the frontal and temporal lobes can limit interactions with other parts of the brain, often presenting as changes in behaviour, personality, movement and communication. A person with FTD may also experience language difficulties, known as primary progressive aphasia. Bruce Willis was diagnosed with aphasia last year, ending his acting career.
In addition to behavioural and personality changes, symptoms of FTD may include:
Difficulties with speech
Memory loss
Withdrawn or disinhibited behaviour
Becoming easily distracted or repeating the same actions continuously
Overeating or drastic changes in food preference
Incontinence
Personality changes are more apparent in the early stages of FTD, with memory decline often not arising until its later stages.
How does dementia impact the diagnosed person's loved one?
The impact of dementia can strain the emotional well-being of partners and loved ones when someone is diagnosed. In a previous interview with Yahoo Canada, Natasha Jacobs, advisory group lead for the Alzheimer's Society of Canada, said changes in moods and behaviour can be difficult to process in a romantic relationship.
"Your partner may obviously seem a lot different than you're used to, and your conversation — the pace and how your chatting with each other — will change."
Even things that seem small can lead to frustration. "To not know whether it's night or day, to be sleeping a lot more or to not know to wake up and get dressed, and then your partner having to help you with those things, or remind you of those things is really difficult."
Can you maintain emotional and physical connections with dementia?
Daily rituals, such as walks and intimate dinners at home, become essential in maintaining emotional and physical connections when it comes to dementia.
Jacobs said it's definitely possible, and it's about "continuing to care for the person for who they are still, and who they once were." She explained it's about moving forward with love and care.
People with dementia can continue to have a healthy intimate life with their partner for many yearsNatasha Jacobs
The Alzheimer's Society of Canada explained dementia "does not change the need for love and affection," but it can affect a person's interest in sex. It's important to talk about this with your partner, especially in the early stages of dementia.
"People with dementia can continue to have a healthy intimate life with their partner for many years," the agency explained, emphasizing the need for openness. "The changes in relationships and sexual needs of both the person with dementia and their partner can cause fear, confusion, anxiety, embarrassment and sadness."
A partner who is in a caregiving role may also have their needs change as they adjust to a new dynamic, and may feel guilty. That's why communication, as early as possible, is key.
"Partners who wish to be intimate can continue to be so with mutual agreement and with an understanding that how they express intimacy may change as the dementia progresses. Often it is not a matter of ceasing sexual activity, but finding different ways of expressing intimacy," the Alzheimer's Society of Canada explained.
More resources on intimacy in dementia are available online.
What can you do when your loved one is diagnosed?
Some key strategies in helping your loved one who has been diagnosed with dementia can include:
Using visual aids (visible clocks, calendars for day-to-day awareness)
Decluttering (helps with confusion)
Establish routines (ie. daily walks)
Embrace technology (set alarms or use voice-activated assistants like Siri)
Substitute busy events for intimate ones (ie. having a romantic dinner at home)
Plan for the future (early talks about role changes and establishment of a care team)
It's important to talk about ways to move forward as the dementia progresses, too. "You could speak to a social worker, putting together this sort of care team so that when the time comes, you're well supported, and you're well educated."
When partners and family members become caregivers, Jacobs assures there's a wide range of support systems available in Canada.
A crucial piece of advice from Jacobs is also "looking after yourself as somebody who's looking after somebody with dementia." Finding time for yourself is key in having "the strength and the clarity to love your partner," she explained.
The Alzheimer's Society of Canada has a long list of resources available on what to expect from dementia, how to handle certain behaviours, and more for caregivers and those living with dementia.
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