Signs, Symptoms, and Support for Frontotemporal Dementia (FTD)While Pick's disease or frontotemporal dementia (FTD) is a less common form of dementia, it is a significant cause of dementia in people under the age of 65. Patients with Pick's initially exhibit marked personality and behavioral changes, before a decline in the ability to speak coherently. This means it can be frequently misdiagnosed in the early stages as depression or Alzheimer's disease. There is currently no cure for Pick's disease, but by understanding the unique symptoms you can better manage the disease and improve your quality of life.
According to Arnold Pick, who first described the disease in 1892, Pick's disease causes an irreversible decline in a person's functioning over a period of years. Although it is commonly confused with the much more prevalent Alzheimer's disease, Pick's disease is a rare disorder that instead of affecting many different parts of the brain, causes a slow shrinking of cells in specific parts of the brain. Excess protein build-up causes the frontal and temporal lobes of the brain, which control speech and personality, to slowly atrophy. It is therefore classified as a frontotemporal dementia (FTD), otherwise known as frontal lobe dementia or frontotemporal lobar degeneration (FTLD).
As well as causing speech and behavioral changes, Pick's disease also creates memory problems similar to those experienced by people with Alzheimer’s disease, along with cognition and judgment problems. Pick's disease and other frontotemporal dementia account for up to 15 percent of all dementia cases.
Causes of Pick's disease
Like Huntington's disease and Lewy Body dementia, Pick's disease or FTD is the result of a build-up of protein in the affected areas of the brain. The accumulation of abnormal brain cells, known as Pick bodies or Pick cells, eventually leads to changes in character, socially inappropriate behavior, and poor decision making, progressing to a severe impairment in intellect, memory, and speech.
Pick's disease usually strikes adults between the ages of 40 and 60, and is slightly more common in women than in men. Unfortunately, the cause for the build-up of protein that results in Pick's disease is unknown. A few studies suggest that Pick's disease may have a genetic component, but most family members are unaffected. Other risk factors are unknown.
In contrast to Alzheimer's disease, where memory loss is the predominate early sign, the first symptoms of Pick's disease or FTD usually involve personality changes or a decline in basic functioning. Pick's disease can also occur at an earlier age than Alzheimer's disease. While cases have been reported in people as young as 20 years of age, symptoms typically first appear between the age of 40 and 60. The progression of symptoms in Pick's disease is fortunately slow, however symptoms do worsen over time as brain cells continue to degenerate. The following symptoms are typical of patients with Pick's disease. More severe symptoms appear in later stages of the illness.
Behavioral signs and symptoms of Pick’s disease
- Impulsivity and poor judgment
- Extreme restlessness (early stages)
- Overeating or drinking to excess (when this was not previously a problem)
- Lack of attention to personal hygiene
- Sexual exhibitionism or promiscuity
- Withdrawal or decreased interest in activities of daily living
- Decline in function at work and home
- Repetitive or obsessive behavior
Emotional signs and symptoms of Pick’s disease
- Abrupt mood changes
- Lack of warmth, concern, or empathy
- Rudeness, impatience, or aggression
- Easily distracted; poor attention span
- Unaware of the changes in behavior
Language signs and symptoms of Pick’s disease
- Loss of vocabulary
- Trouble finding the right word
- Difficulty speaking or understanding speech
- Repeating words others say
- Weak, uncoordinated speech sounds
- Decrease in ability to read or write
- Complete loss of speech
Physical signs and symptoms of Pick’s disease
- Increased muscle rigidity or stiffness
- Difficulty moving about
- Lack of coordination
- General weakness
- Memory loss
- Urinary incontinence
Pick's disease and FTD can only be conclusively determined by a post-mortem examination of the brain, but there are ways to reach a probable diagnosis when symptoms set in. Once diagnosed, patients and caregivers can use practical self-help strategies and professional support to treat the symptoms of the disease.
How is Pick’s disease diagnosed?
Currently, the best methods for reaching a probable diagnosis involve careful symptomatic evaluation, together with brain scans and EEGs. These techniques can help ascertain whether the condition is likely to be Pick's disease or a related disorder such as Alzheimer's disease. Although these dementias may be similar, there are clear symptoms that set them apart.
If at least three of the following five distinguishing characteristics are present in the early stages, the diagnosis is likely to be Pick's rather than Alzheimer's. Also, as compared with Alzheimer's disease, obvious mental impairment and memory loss occur later in Pick's disease patients than in Alzheimer's patients.
The five distinguishing features of Pick’s disease
Doctors look for at least three of the following to diagnose Pick’s disease:
- Onset before age 65
- Initial personality changes
- Loss of normal controls, e.g., gluttony, hypersexuality
- Lack of inhibition
- Roaming behavior
Pick's disease and other types of frontotemporal dementia progress rapidly, shortening life on average to about six to eight years. However, some people do live for as long as 20 years with the disease. There is currently no cure for Pick's disease, so treatment is usually similar to treatment for Alzheimer's: symptom management that is aimed at maximizing quality of life. This may include medications to manage particular symptoms, regular supervision, and assistance. Treatment should also include emotional and substantive support for the caregiver. If you or a loved one has Pick's disease, the following may help control symptoms.
- Sensory function aids. Eyeglasses or hearing aids can bolster failing senses .
- Behavior modification. Systems that reward positive behaviors can help reinforce appropriate behavior when symptoms set in. Creating a calm and soothing caregiving environment can also help a dementia patient feel safe and less anxious, often reducing problem behavior.
- Professional therapy. Speech therapy and/or occupational therapy can improve communication and movement.
- Medication to control behaviors that can be dangerous to oneself or others. Antidepressants known as selective serotonin reuptake inhibitors (SSRIs) may offer some relief from apathy and depression and help reduce food cravings, loss of impulse control and compulsive activity.
- Treatment of other disorders that can cause or worsen symptoms of confusion, such as anemia, thyroid disorders, and kidney or liver disease.
- Stopping or changing medications that may worsen confusion, such paracetamol, NSAIDS, and anticholergenics used to treat COPD.
Being diagnosed with a terminal disease can be an overwhelming experience, especially when it involves any form of dementia. Focusing on the positive aspects might seem like an exercise in futility, and yet, there can be unexpected bright spots for patients with Pick's disease. For instance, at the University of California/San Francisco Medical Center's Memory and Aging Center, doctors discovered a small group of frontotemporal dementia patients who developed new creative skills in music and art. The artistic talents emerged when the brain cell loss occurred predominantly in the left frontal lobe, which controls functions such as language.
As the ability to communicate through words declined, these patients' brains somehow accessed other realms of self-expression. So exploring and encouraging the development of latent skills is one way in which Pick's disease patients can maintain their quality of life and possibly slow the progress of mental deterioration. Other ways you can cope with a diagnosis of FTD include:
- Becoming informed. Learn as much as you can about Pick’s disease and frontotemporal dementia. The more you know, the more control you’ll feel and the better prepared you’ll be to manage symptoms.
- Reducing stress. Stress and anxiety can make exacerbate many dementia symptoms and increase behavior problems. Experiment with different relaxation techniques such as music therapy, meditation, and deep breathing exercises. Pet therapy, involving visits from specially trained animals, can also help to relieve stress and improve mood.
- Treating depression. Depression can be common among those diagnosed with frontotemporal dementia. Treating depression can make it easier to handle the other challenges of the disease.
- Exercising can help relieve stress and boost your mood. Any type of physical activity, even regular walks, can be beneficial, so find the activities that appeal to you.
- Maintaining social activity. Reaching out to family and friends for emotional support can help you avoid isolation. Joining a support group for patients with dementia and talking to other people facing similar challenges can help with feelings of isolation and depression and provide a wealth of coping tips. You may also want to talk to a therapist, counselor, or clergyman.
- Seeking out mental stimulation. Playing cards or word games such as Scrabble, or completing crossword and Sudoku puzzles can exercise your brain and may help slow cognitive decline in people with Pick’s or FTD.
Make important decisions early
Avoid future medical, financial, and legal confusion by communicating your wishes and creating a plan. Designate a Power of Attorney for money and legal matters. Discuss and document treatment and end-of-life preferences with your doctors and family members. Create a Living Will and appoint someone you trust to make decisions for you in case you can no longer make them for yourself. Although these conversations may be difficult, making your wishes known is empowering.
Caring for someone with dementia can be a life-changing experience. People with Pick’s disease or FTD will eventually need daily or around-the-clock care—taking this on is a huge responsibility. You may feel alone, and the kind of daily challenges you face can be tough on your physical and mental health. One of the most important ways that you as a caregiver can help the patient with FTD is to make sure you also take care of yourself.
- Seek help. Reach out to other family members, friends, or volunteer organizations to help with the daily burden of caregiving or to arrange respite care. Caregivers who take regular time away not only provide better care, they also find more satisfaction in their caretaking roles.
- Schedule regular exercise. Exercise releases endorphins that make you feel happy. If you can’t block out an hour away at a time, try ten-minute sessions sprinkled over the course of the day.
- Stay socially active. Stay connected to friends and family and welcome the support they give you. This will lighten the load of caretaking.
- Talk to others in similar situations. Caring for someone with dementia can be very hard work—both physically and emotionally. Joining a support group can provide a welcome opportunity to speak frankly about your experiences with other caregivers. See Resources and References section below for links to FTD support groups in your area.
- Learn how to manage stress. Caregiving for a loved one with dementia can be one of the most stressful tasks you’ll undertake in life. Relaxation techniques such as deep breathing, meditation, rhythmic exercise, or yoga can help reduce stress and boost your mood and energy levels.
Coping with the loss of personality
Often, the hardest thing about seeing someone you love develop Pick’s disease is witnessing the loss of or change in former personality. If the patient is living at home, you may remember the way he or she was before the disorder—a tragic and daily realization. In an assisted living facility, the fact that those around the patient did not know him or her before the disease may be equally heartbreaking. Either way, this aspect of the Pick’s disease is extremely distressing for loved ones; seeking support and taking time for yourself can help you cope.
While there is currently no cure for Pick's disease or FTD, the National Institute of Neurological Disorders and Stroke (NINDS), and other branches of the National Institutes of Health, conduct regular research related to frontotemporal dementia. They also support additional research through grants to major medical institutions across the country. Their goal is to learn more about the causes, diagnosis, treatment, and possible prevention of Pick's disease and other FTDs. See Resources and References section below for links to learn about the latest research updates in treatment for Pick's disease and other frontotemporal dementia, including clinical trials for new medications.
More help for Pick's Disease
- Understanding Dementia: Signs, Symptoms, Types, and Treatment
- Huntington's Disease: Symptoms, Treatment, and Hope
- Lewy Body Dementia: Signs, Symptoms, Treatment, and Caregiving for Dementia with Lewy Bodies
- Creutzfeldt-Jakob Disease (CJD): Types, Symptoms, and Treatment
- Dementia and Alzheimer's Care: Planning and Preparing for the Road Ahead
- Caregiver Support and Help: Tips for Making Family Caregiving Easier
- Support for Alzheimer's and Dementia Caregivers: How to Get the Caregiving Help You Need
- Respite Care: Finding and Choosing Respite Services
Resources and references
NINDS Frontotemporal Dementia Information Page – Defines frontotemporal dementia (which includes Pick's disease), including patient prognosis, treatment protocols and research. (National Institute of Neurological Disorders and Stroke)
Pick's Disease: An Explanation (UK) – Detailed description of symptomatology and suggestions for managing the illness. (Pick's Disease Support Group)
Frontotemporal Dementia – Explains the distinction between FTDs (which includes Pick's disease) and other dementias, including background on genetics, evaluation and treatment, and a section for caregivers. (University of California, San Francisco)
FTD Research Updates – Research updates for the frontotemporal dementia community. (FTD talk)
Newly Diagnosed – Tips for coping with a diagnosis of FTD, including planning care and seeking support. (AFTD)
The Frontotemporal Dementia Support Group – Support resources for carers coping with behavioral changes in a loved one. (FTDSG)