The Caregiver's Guide to Pick's Dementia
Pick's disease, also known as Pick disease or Pick's dementia, is a rare type of frontotemporal dementia (FTD) that accounts for just 1-5% of all dementia cases. It is characterized by the presence of abnormal protein accumulation, called Pick's bodies, in the frontal and/or temporal regions of the brain.
Those regions of the brain typically affected by Pick's disease are responsible for language, behavior and personality.
Diagnosing this rare type of FTD is made by examining symptoms, ruling out other causes and MRI's that may show atrophy, or shrinking of the brain matter, in the frontotemporal lobes of the brain. There may be a genetic link, but most close family members are not usually more at risk than the rest of the population.
Research on this type of dementia is relatively new as the disease has often been confused with Alzheimer's. There are several important differences between the two types of dementia.
Pick's disease starts younger in life than Alzheimer's. Also, the primary initial symptoms in this dementia begin with behavior and personality changes and then will progress to memory loss. In Alzheimer's, memory loss is usually the presenting symptom, and personality changes occur later in the disease process.
Physicians look for at least 3 of the following 5 traits typically associated with this type of dementia:
- Onset of symptoms beginning between the ages of 40 - 65
- Distinct personality changes as the presenting symptom
- Behavior changes, including loss of inhibition
- Loss of control, for example, overeating or hypersexuality
- Roaming type behaviors
At this point, there is no known cause and no known cure for Pick's disease. The average life span following diagnosis is between 2 - 10 years and the condition is progressive and always terminal. Treatment is focused on therapies, optimizing health, medications to manage behaviors that are destructive or potentially harmful, and support for families and caregivers.
Pick's Dementia Caregiver's Tips
If you know and love someone with Pick's disease, you are well aware of how difficult this disease is to manage. The dramatic personality changes and inappropriate behaviors are difficult enough to manage at home, but even more so in public.
One good tip is to arm yourself with "Awareness Cards". These are the same size and shape as a typical business card and are printed with a little bit of information about the disease. The cards often state something like this:
Front of Card
- This person has a Brain Disease
Back of Card
- This person suffers from Pick's Disease and may exhibit problems with behavior, personality and language.
- Your patience and support is appreciated.
They are easy to hand to people and can help you deal with the stress of being in public.
Make sure your loved one is always wearing a
medical alert device
, like a
medical alert bracelet
, at all times.
Because of the bizarre behavior often exhibited by people suffering from FTD, there is a chance emergency personnel, including police, could believe that they have a psychiatric condition and not provide the type of help your loved one needs at the time.
Try to keep your home life as calm as possible without a lot of changes in daily routine. Make sure friends and family, even neighbors, understand what is going on so they can provide you with assistance and support as needed.
If you love someone diagnosed with this disease, you need to prepare and allow yourself to grieve twice. The first time, you are losing the person you know and love. The second grieving process is in preparing for the fact that this is a terminal condition.
Other good references and support groups are listed below.
- Alzheimer's Association:
Provides good resources on all types of dementia
- Agency on Aging:
Your local chapter can help get you in touch with support groups in your area
- Losing Lou-Ann:
A biographical journey, written by a husband caring for his wife, from diagnosis to her death seven years later.
- Touching the Leaves:
An online journal of one family's process through this disease
- Pick Support Group:
An online support group with great tips and advice on living with Picks disease. This is the organization that has the awareness cards.
- Pick's Disease and Pick Complex:
A more in depth, scientific overview of this disease. This book can be ordered now through Amazon.
Loving someone with Pick's disease can be heartbreaking. Please take the time to enjoy every minute you have left. Take time for yourself and schedule time away to refresh yourself. Reach out to others that know what you are going through.
Keep yourself and your loved one safe as this disease progresses and lean on family and friends that are most likely very willing to help you through this process.
If I can be of any further help, please
contact me directly
and I will respond personally with an answer to your questions.
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