Over 5 million people live with dementia in the USA. That's a number larger than the population of 29 states in America and roughly the size of Phoenix and Los Angeles combined. Worldwide 47 million live with the condition. Yet if you are caring for a loved one who has dementia you may feel like you're alone in the world. There are no sure preventions and no cures. As the disease progresses it requires more hours of caregiving. Later stages may drain assets, cause work absences, and intensify a sense of isolation. This is a digital library of the stories about those individuals and families struggling to cope with the disorder even as education and awareness is sparse in many communities and stigmas are strong.
About the library: Though medicine doesn't fully understand dementia there has been progress into learning the basic trajectory and patterns of various subtypes and, where possible, I've categorized the library by each type. I will also categorize by familial perspective as well ie: spouse caregiver, daughter/son caregiver etc. This dynamic digital library will spread over several blogs. This section, on frontotemporal dementia, is the first in the series. It is by no means a complete library of everything online but it contains highlights of testimonials and stories that are well documented. Check back frequently for new entries.
Frontotemporal Dementia, FTD Digital Library
About Frontotemporal Dementia (FTD): Apathy, loss of empathy and inhibition, cravings, loss of judgement and compulsive behavior make this condition especially challenging. Also called Pick's Disease, FTD is an early onset dementia that strikes people at prime employment age 45-65. It is often misdiagnosed and mistaken for sociopathic behavior, a mental condition, or a midlife crisis because, unlike most types of dementia, first signs are changes in behavior, personality, language or speech. Tragically, aggression, lack of judgement and inhibition caused by FTD can result in bouts with the law prompting ethics questions and motivating some professionals to call for neuropsychological testing on first time mid-life offenders to rule out neurodegenerative disorders.
In depth study of FTD: For a neuropsychological discussion about FTD and variants with a special focus on how it impacts love and personal relationships see Rankin and Seeley discuss the condition. Research on the family experience of living with FTD is still new as this case study illustrates. It delves into the consequences of living within four themes common to FTD caregiving: creating routines, policing and protecting, meeting communication challenges, and learning to adapt. FTD impacts over 50,000 Americans.
A note about resources: If you're living with someone who has FTD please consider a support group if you haven't already. The national program, Powerful Tools for Caregivers is also helpful and free. It will provide you with community and proven coping strategies. Your community senior center or area agency on aging can point you to a local Powerful Tools class. You'll also find several online resources including the Association for Frontaltemporal Dementia (AFTD) and the FTD Caregiver Support Center.
Caring for a husband living with FTD
When Illness Makes a Spouse a Stranger, New York Times, 2012. A tender portrait of Ruth French and the love of her life-Michael. Michael's changing behavior had pushed her to consider divorce when, in 2007, they discovered he was suffering from frontaltemporal dementia spurring her to renew her pledge to their relationship.
The blog My Husband Has FTD profiles two years of living with FTD caregiving. In all the author, already a caregiver for her parents, was a family caregiver for 17 years when her husband died of a massive heart attack in February 2014.
Author and illustrator, Nancy Carlson, has a beautiful blog, Putting One Foot In Front Of The Other, about her experience with early onset FTD. Her husband passed away in November 2016 and she continues to blog about her life since.
Laughing Along with FTD is an honest blog about giving caring at home to a beloved husband. This couple, married over 30 years, is in the 7th year of living together with early onset FTD. The blogs (about 2 a year) are powerful and to the point.
Denise's Decision is a powerful video documentary of Denise Thomas' struggle to cope with husband Randy's FTD. Excellent.
Robin Albright's story is exemplary of the misdiagnoses and financial struggle associated with FTD. "He stopped talking to me and rarely looked at me unless it was an empty stare," she writes. Was there another woman she wondered? In the video below, as problems progressed, we see her confide, "I was living with a stranger and I felt like no one understood."
Caring for a mother with FTD
A lesser-known Dementia That Steals Personality from The Atlantic 2014 portrays the journey of the Savani family as their mother, Kathy, struggled with frontaltemporal dementia.
The blog My Demented Mom : a site for young adult caregivers struggling with the long goodbye follows 31 year old Kathy Ritchie as she caregives her FTD mother over 8 years. She writes "if this blog helps one person get a grip on what is a complicated and emotionally and financially draining mess with no happy ending in sight, then I am happy I did so." Fabulous resource links at this site and stories by guest bloggers such as Susan Molloy coping with her mother's care as an only child.
"It Never Rained on My Parade" by Kim Reeder about her mother Faye's descent into frontaltemporal dementia. She writes, "Sometimes it is hard to imagine that the person who currently inhabits my mother’s body is my mother."
"Ask a Psychologist:My Parent Has Dementia" is a Q and A from a woman wondering what to do about her wedding plans now that she's recently discovered that her mother has FTD. This short discussion exemplifies the dramatic impact on personal goals that result when a family member receives this diagnosis and, though it specifically addresses a wedding, this advice applies to many important events that could arise while caring for a loved one with FTD
Caring for a father with FTD
"Why FTD is so hard to talk about---my dad's story," by David Heitz. He explains, "I would go into the office saying horrible things about him. I had no idea he had a rare disease – I just thought he was a mean person who had become even meaner with old age."
"The grief and helplessness of dementia--both for my father and for me," an opinion piece by Michael R Auslin in the Washington Post portrays his struggle of acceptance. He writes, "No matter where I was, he reminded me that I always had a home to return to and a father who would protect me. Yet when I last saw him, he was curled up in twisted blankets on a single bed in a bare room in the geriatric psych ward."
David Baddiel's "Laughter is the best medicine" portrays his father Brian. Caution: this article contains foul language. Obscenity is a hallmark of FTD yet David's dad leaned toward obscenity before his FTD diagnosis. This interplay between his father's naturally coarse personality and the progression of FTD symptoms leads to a touching story end. Baddiel built a stand up comedy routine based on his experience.
"Keeping my dad alert: an unconventional and successful approach to dementia" tracks son Ohbi's attempt to alleviate some of his father's symptoms with natural means such as diet and supplements. Ohbi talks about frustrations with the standard medical approach to FTD and dementia in general which provides no cure yet discourages creative/natural ideas. Ohbi eventually turns to crowd sourcing.
Caring for a wife with FTD
Next Avenue's series on early onset Frontotemporal Dementia follows Dan Browning's experience caregiving his wife, Liz. Browning discusses overcoming problems securing disability, dealing with wandering, and the process of restructuring life goals, etc.
Keith Brown talks about his journey with wife Elaine in "How I coped with my wife's early onset dementia" at the guardian.com Diagnosed at 56 Keith became her full time carer. He discusses difficulty sleeping because she wakes at night, loneliness since she stopped conversation, and his concern for her if something should happen to him.
In CTV's feature "The younger face of dementia: Ottawa man shares wife's battle with disease" they profile 44 Lisa Dineen. Her FTD took a dangerous turn clouding her judgement and inhibition in a manner that threatened family safety. She's living now in a locked ward and her husband has become an advocate for public awareness and a national dementia strategy.
Caring for Loved Ones with FTD
Blogger Rob Perry cared for his mother in the UK when she was diagnosed with early onset Frontal Temporal Dementia. In his blog, Demention, he continued to interview families caring for loved ones with FTD even after his mom died in 2013.
Friends and Family coping with FTD
It is what it is by The Association of Frontotemporal Dementia tells the stories of five different family constellations living with the condition.
The LA Times feature "Little-known brain disease rips apart lives of victim and loved ones" profiles Stu (father and husband). Stu's first behavior changes were shrugged off as "people change." Eventually behavior changed so much Stu walked out on his wife. When the family discovered he was struggling with FTD she had to explain to family and friends why she took him back then faced justifying to herself why she would assume the role of his caregiver. For a photographic profile of Stu and Wife Moe see the companion Times story.
This 5 minute preview of "Looks like Laury, Sounds like Laury," in the video below, out of WGBH Boston, profiles the frontaltemporal dementia experience of 45 year old actress Laury Sacks and the reaction of family and friends. It was 2015 winner at the Neuro Film Festival.
First Person Accounts
At The Association of Frontotemporal Degeneration 5 people who have FTD share their stories. You'll also find links to blogs about living with frontotemporal dementia from the perspective of patient and caregiver.
In this excellent archived Canadian webinar Living with Young Onset Dementia: Let's have a conversation, sponsored by the Brainxchange, two women advocates who are living with young onset dementia, one with FTD, talk about everyday life and their advocacy at the provincial, national and International level. As with many other stories, Reverend Faye Forbes relays the long road to an accurate diagnosis and how hard it was to pursue the truth once apathy set in. Mary Beth had a similar experience receiving 12 different diagnoses and countless brain scans on her way to learning she had FTD. She said getting the diagnosis was an important step but after that she had to get past the stigma and concern that there was no quality of life left before she could move on.