I attended my Aunt Patti’s funeral last week. She was 78 and had lived with dementia for the past 14 years. What I remember most about her is that she was usually smiling and happy. Even if she didn’t know who I was, the last time I saw her she seemed happy and she made me feel welcome in her presence.
But with each passing year, she retreated more and more and as the priest said during the service, “she was gone long before she died.”
He also remarked about how difficult it is to understand dementia — and painful to eventually lose the relationship you once had with the person you loved, as memories gradually fade and disappear.
My cousin Colleen says for her the hardest part of the progression of her mother’s disease was seeing her become a completely different person — from the way she dressed and decorated the house to how she treated Colleen and her sister, Nancy. “She became very jealous of Nancy and was not very nice to her, making it clear to her that she preferred being with me.”
It was also sad to see her unlearn everyday tasks that she had been doing all her life, says Colleen. “To look at the phone and have no idea how to work it. To walk in her flower gardens and not remember the names of her cherished flowers, and remembering how she enjoyed telling us the types of flowers using their Latin name.”
I feel a similar sadness and also see a relationship shift with my own mother, who is still in the earlier stages of dementia. (My mother and aunt were related by marriage, so no genetic link). In our family, my mother always ruled the roost! I guess she still does in her own fashion, but now she needs a strong support team. She can’t pay her bills anymore because it’s too confusing. She loses track of the time and day. She considers chocolate the most important food group. OK, I’ll give her that one. All of us who know her well can vouch that chocolate has always been her favorite food!
Nearly every day though, something comes up that we don’t understand. That’s why I try to learn as much as I can about Alzheimer’s disease and dementia and why I recently attended an all-day workshop presented by Alzheimer care consultant, Darlene Field.
As I mentioned in my previous post — If You Forget, Does It Mean Alzheimer’s? — at the workshop, I learned that Alzheimer’s is the most common cause of dementia. Both my mother and my aunt were diagnosed with dementia, but their causes were different. I’ll get to that shortly, but first a brief explanation of dementia, which is not a specific disease. It’s a collection of symptoms, or as Darlene describes, a syndrome.
Definition of dementia
Dementia: a usually progressive condition marked by the development of multiple cognitive deficits, e.g., memory impairment, aphasia (inability to use or comprehend words) and inability to plan and initiate complex behavior. Source: Merriam-Webster
Symptoms of dementia
- Memory loss
- Difficulty with complex tasks
- Disorientation to time and place
- Language problems
- Lack of concentration
- Problems recognizing objects
- Difficulty with old skills
- Personality change
- Loss of control
- Difficulty thinking logically
- Difficulty using reason
Memory loss may be at the top of the list of symptoms, but by itself, memory loss doesn’t mean you have dementia. You have to have problems in at least two areas.
And although the majority of people who have been diagnosed with dementia have Alzheimer’s disease, there are many more causes of dementia symptoms, some of which may surprise you.
Causes of dementia symptoms
- Alzheimer’s disease
- Vascular issues (strokes, “hardening of the arteries”)
- Chronic alcoholism
- Vitamin deficiency
- Metabolic disorders
- Hormone disorders
- Head injury
- Brain tumor
- Exposure to toxins
- Lack of oxygen
- Medication abuse or reactions
- Late-state Parkinson’s disease
- Rare disorders, such as:
- Lewy body disease
- Creutzfeldt-Jakob disease
- Pick’s disease
- Huntington disease
My mother has been diagnosed with Alzheimer’s disease and my aunt probably had Pick’s disease. I won’t go into detail about either disease but generally, the symptoms are not the same.
Early symptoms of Pick’s disease
- Change in personality
- disregard for social decorum and the feelings of others
- diminished social skills
- Decline in function
- poor judgment
- Memory loss that disrupts daily life
- Challenges planning or solving problems
- Difficulty completing familiar tasks
- Confusion with time or place
However you look at it, Alzheimer’s disease or Pick’s disease or anything that causes dementia is heartbreaking. Some causes are reversible or treatable, which is just one reason why it’s important to get a correct diagnosis.
If you’re like me, you sometimes worry about being forgetful. Because of my mother, I probably worry more than usual. This chart from Darlene may help a little.