When your loved one is diagnosed with Alzheimer’s or Dementia it can be a hard pill to swallow and quickly become very stressful. We recently interviewed Cassandra Jones of Dementia Diaries: A Journey with Dementia. Cassandra’s mother was diagnosed with a rare from of Dementia called Semantic Dementia. This rare form of this illness affects the frontotemporal lobes of your brain. She soon found herself along side with other family members and family friends caring for her mother. Throughout her experience with caring for her mother, she has set out on a whole new journey to assist others with their caregiving needs. Cassandra started a foundation that is not only a resource for caregivers but assists those in need of financial assistance pending that they meet the qualifying requirements.
How did your journey with Dementia start?
My journey with dementia officially started in March of 2012 when my mom (age 50 at the time) was diagnosed with semantic dementia; although, we had been dealing with strange behaviors with my mom for several years prior to her diagnosis. Knowing what we know now about the disease, we can see that she first started showing signs in 2007 and by late 2009, we knew that something was “wrong” with mom. Our journey to getting her diagnosis is another story for another day!
What is Frontotemporal lobe dementia? How is it different from other forms of dementia?
Frontotemporal lobe dementia (FTD) is a group of disorders caused by progressive cell degeneration. They have linked genetic mutations and protein build ups to FTD. It affects the frontal lobes and the temporal lobes of the brain and actually causes shrinkage and reduced function in those areas of the brain. It is those regions of the brain that are responsible for speech, behavior, emotions and some movement. There are a few different variants of FTD as well, including progressive non-fluent aphasia, behavior variant and semantic dementia.
The area of the brain that is affected is what differentiates FTD from other forms of dementia (such as Alzheimer’s). In many other forms of dementia, memory might be the first area affected and as the disease progresses, it will later affect behaviors and speech. FTD seems to be opposite; memory loss comes later, in more advanced stages of the disease. Eventually, in the later stages of the disease, all forms of dementia look the same with the loss of all abilities, including continence, swallowing/eating, walking, etc.
Why do you believe that support groups for the caregivers of an ill loved one are so important?
Everyone grieves and deals with disease and loss differently. I have some family members who do not feel that it is important, or even productive, to be involved with support groups. For myself, it has been my saving grace. Most people don’t have any idea what this disease entails. It isn’t just about losing memory, and it is so much more than what you watch in movies like “The Notebook”. It is devastating to sit by and watch someone you love lose every part of themselves, little by little, day by day. Oftentimes, it is difficult to know what to do in a given situation. This is where support groups have been my saving grace. It’s not so much about crying and commiserating together (don’t get me wrong-those moments are there), but a lot of it is about problem solving and finding answers to difficulties that arise from the disease. Every person is different, but many of us find ourselves in similar situations with our loved ones. It helps to have someone who has been through it to guide me along and it feels good to be able to help someone else by sharing my experiences. It also gives me a bit of comfort to know that I am not alone and that there are others out there who truly know the heartbreak of what I’m going through.
What treatments have you noticed have had a positive effect for your mother?
We haven’t had many successful treatments with my mom. It isn’t for lack of trying; we’ve tried medications to help with some of her behavior issues; we’ve tried exercise, nutritional supplements, music…
Did you try any medical trials? If so, what were the pros and cons of participating in it?
Unfortunately, there are no trials available at this time for semantic dementia. We are on a waiting list with UCLA should any new medical trials come about, but I fear that at this point she is too advanced in her disease to ever make any significant progress.
Are you the sole caregiver for your mother or do you have a caregiving team?
We are fortunate to have a team. My mom still lives with my dad. Because this disease struck her (them) so young, he is not yet able to retire. While he is away at work during the day, we have shifts that different people take to stay with mom. This includes a few other family members, myself, some wonderful women from our church and a couple of paid caregivers. My dad does all the hard work: making sure she showers and changing her into clean clothes, keeping her stocked up on her foods, dealing with problematic behaviors. It is very important for caregivers to get breaks now and then because this disease wears on you; burn out is very common. We do our best to make sure my dad gets breaks and gets away now and then for trips out of town to visit other family members. Between my sister, her husband, my husband and myself, we rotate turns spending the night with my mom (with her usual daytime routine of caregivers) to give my dad breaks. It takes a village!!
Tell us more about the Deana Foundation
The DEANA Foundation was named after my mom and stands for The Dementia Expense And Nursing Assistance Foundation (that’s a mouthful!). When my mom was first diagnosed, I had a hard time finding help, support, or resources for dementia. [bctt tweet=”When my mom was first diagnosed, I had a hard time finding help, support, or resources for dementia”]I searched the internet for answers; even her doctors didn’t have the answers! (until we went to UCLA). One of the biggest frustrations in terms of help has been the financial aspect. In a nutshell, a person with dementia loses his/her ability to take care of him/herself as the disease progresses. It is near impossible for any one person to do this job alone; it wears on you not only physically but mentally and emotionally as well. At some point, it becomes necessary to hire outside help and the costs associated with that are outrageous. There are programs out there for low-income families, and if a person is wealthy, they have options. Middle class families are stuck. They don’t have an option of receiving free in-home health but they can’t afford to hire full-time, in-home health either. They then are forced to put their loved one in a home and the list they have to choose from are not usually the most reputable homes; not to mention the emotional toll it takes on families to have to do this. When my searches for financial help continually came up empty, I became more and more frustrated. That frustration turned to anger and that anger turned into a resolve to make a change! That is when The DEANA Foundation was born. Our mission at The DEANA Foundation is to raise money and award grants to families which will give them options for caregiving, whether it be an adult daycare, in-home help or a live-in facility that they feel comfortable with. Our goal is to alleviate some of the financial burden that comes with that disease. We also offer resources for families such as support groups and referrals. The foundation is still very much in its infancy and as of right now, we are only able to serve families in our immediate community (since that is where we are receiving our funding). But our vision is to expand and open up chapters across the nation so that everyone can have access to our caregiving grants.
With this rare type of dementia, is it known to be hereditary?
Many forms of frontotemporal lobe dementia are known to be hereditary. Semantic dementia, however, is not. Though it is a genetic defect, it comes out of the blue and isn’t passed on. Despite that reassurance, every time I open up the refrigerator only to draw a blank as to what I was looking for, I worry that it is the beginning of dementia for me!
What are the symptoms?
Typically, the early signs of FTD include:
• changes in personality and behavior-lack of judgment, apathy, inappropriate behaviors or actions
• lack of awareness of these changes
• changes in eating (usually overeating)
• trouble using language: trouble finding the right words for things, trouble with comprehension in conversations
• Sometimes, movement disorders such as tremors, rigidity, muscle spasms, poor coordination, etc.
Depending on which variant of FTD a person has, some symptoms may be more prominent in one patient over another. My mom, for example, never exhibited symptoms in her movements but her personality and behaviors were the first things we noticed, followed by trouble with language.
How can readers connect with you? Any social media sites?
I have a blog that I write about our family’s journey with dementia, which can be found at: www.journeywithdementia.com. We also have a foundation page, which my blog will soon be rerouted to. That address is: www.thedeanafoundation.org.