When Should I Call My Healthcare Provider
If you are diagnosed with FTD, you and your caregivers should talk with your healthcare providers about when to call them. Your healthcare provider will likely advise calling if your symptoms become worse, or if you have obvious or sudden changes in behavior, personality, or speech. This includes mood changes, such as increasing depression or feeling suicidal.It can be very stressful for a caregiver to take care of a loved one with FTD. It’s normal to have feelings of denial, anger, and irritability. Caregivers may also have anxiety, depression, exhaustion, and health problems of their own. Caregivers should contact their healthcare provider if they have any of these signs of stress.
What Changes Can I Expect
Unlike Alzheimers disease , frontotemporal dementia often shows up as behaviour changes, poor judgment, or language difficulties. The signs and symptoms may vary greatly from one individual to the next.
Researchers have identified several clusters of symptoms that tend to occur together, and 3 broader subtypes have been identified: Behavioural variant FTD, primary progressive aphasia and FTD with a movement disorder.
Document Care Preferences In Advance
Planning care early in the disease process is a meaningful way to identify, document, and communicate a patients goals of care. This ensures that the family and the care team honor the patients wishes like determining do not resuscitate status, using ventilator support, and providing enteral feedings.
Such planning can also address issues of personal importance. For instance, a person with dementia may wish to have a quilt a loved one made on the bed during their final hours.
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What Causes Frontotemporal Dementia
FTD happens when neurons, a key type of brain cell, deteriorate. This usually happens when there’s a malfunction in how your body creates certain proteins. A key part of how proteins work is their shape. Much like how a key won’t turn or open a lock if it’s not the right shape, your cells can’t use proteins when they’re not the right shape. Your cells often can’t break those faulty proteins down and get rid of them.
With nowhere to go, those misshapen proteins can tangle and clump together. Over time, these faulty proteins accumulate in and around your neurons, damaging those cells until they dont work at all. Experts have linked misfolded proteins with FTD and its related conditions, such as Picks disease. Misfolded proteins also play a role in conditions like Alzheimers disease.
These protein malfunctions happen with certain DNA mutations. DNA is like an instruction manual for your cells, telling them how to do a specific job. Mutations are like typos in the manual. Your cells strictly follow DNA instructions, so even small mutations can cause problems.
Some DNA mutations run in families, which is why about 40% of FTD cases involve a family history of the disease. Mutations can also happen spontaneously, meaning you developed the mutation and didn’t get it from your parents.
What Is Parkinsons Disease
Parkinsons disease is a type of dementia that can manifest itself in many different forms that vary based on your genetics, family history, health, and lifestyle. The first step to diagnosing and treating Parkinsons disease or dementia is to become familiar with it. The main symptoms of Parkinsons disease include tremors, impaired movement, and instability. We have created a summary of the factors associated with a higher risk of developing Parkinsons disease.
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Support For People With Ftd Support For People With Ftd
What health and social care professionals can help a person with FTD? What health and social care professionals can help a person with FTD?.
Supporting a person with FTD often involves a team of professionals that can include a:
When someone has problems with movement or co-ordination, support from a physiotherapist or occupational therapist can also help.
How can support groups help a person with FTD? How can support groups help a person with FTD?.
Support groups can offer useful advice and emotional support to people living with FTD and those who care for them.
There are specialist support groups for younger people with dementia or FTD and for people affected by familial FTD .
Spending time with other people in this way can also help if a person with FTD seems to lose motivation in things or appears bored or lonely. You can search for groups in your area on our dementia directory.
How can carers support a person with FTD who is behaving differently? How can carers support a person with FTD who is behaving differently?.
People caring for a person with FTD may find the following tips useful.
Trouble With Balance And Mobility
At Easter 2016 we reached another crisis when her weight dropped drastically and a PEG tube was considered, but it was decided that she would be at great risk if she underwent the operation. However, once she came off her medication for osteoporosis she began to take food again and regained weight.
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Can Lifestyle Changes Help Frontotemporal Dementia
Medication can be effective for treating dementia, but lifestyle treatments can help, too. Helping people find a comfortable environment can help them cope with the symptoms of dementia.
Environment is important. Maintaining an environment that doesnt upset someone is vital. Make sure your home is well-lit and has minimal noise. People with behavior problems need to be in environments that are familiar. They may also need to avoid large crowds.
People with speech problems may need to be in environments where communication is easier. They may wish to keep tools for communicating, like a pen and paper, with them all the time.
Establish Goals Of Care
Hospice professionals can help families and caregivers have discussions and make decisions concerning end-of-life issues. Establishing the goals of care should include any previously documented wishes of the patient and family preferences while honoring their cultural and religious values.
For instance, what are the plans for nutrition when the person with dementia has difficulties eating or drinking?
Families often struggle to understand nutrition and eating issues related to dementia and should receive ongoing education, said Heinzerling. Handfeeding is recommended in advanced dementia instead of tube feeding, and families need information about why that is recommended.
Heinzerling added that people with advanced dementia generally have poor outcomes from hospitalizations. Considering the risks and benefits, the hospice team should discuss wishes for hospitalization with the family well before an acute event. Even if there is a written directive not to send the person to the hospital, families may request to override that in some scenarios, so it is best to talk those through in advance.
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What Are The Risk Factors For Frontotemporal Dementia
Frontotemporal dementia has one known risk factor: genetics. Scientists have found several genes related to the disease. If one of your family members is diagnosed with frontotemporal dementia, you have a greater risk.
However, not everyone with a family history will develop a problem. Its also estimated that more than half of the individuals diagnosed with frontotemporal dementia dont have a family history associated with the disease.
Doctors cant diagnose frontotemporal dementia with a single test. Instead, your doctors will try to rule out other conditions or diseases that cause similar symptoms.
Some of the tests used to diagnose frontotemporal dementia include:
- blood tests: These can help identify other possible causes.
- neuropsychological testing: These tests check your judgment and memory skills, and help determine what type of dementia you may have.
- brain imaging: Doctors will check for tumors or blood clots.
- MRI: A magnetic resonance imaging test gives doctors a detailed image of your brain.
- CT scan: A computerized tomography scan creates images of your brain in layers.
Frontotemporal dementia cannot be cured. Treatment is aimed at managing and alleviating symptoms.
Common treatments include:
Tips For Caregivers And Families Of People With Dementia
On this page
A caregiver, sometimes referred to as a caretaker, refers to anyone who provides care for another person. Millions of people living in the United States take care of a friend or family member with Alzheimers disease or a related dementia. Sometimes caregivers live with the person or nearby, other times they live far away. For many families, caring for a person with dementia isnt just one persons job, but the role of many people who share tasks and responsibilities. No matter what kind of caregiver you are, taking care of another person can be overwhelming at times. These tips and suggestions may help with everyday care and tasks.
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How Do I Find Doctors Who Know About Ftd
Because FTD is still today far too little known and relatively uncommon, it can be difficult to find professional help from people who have experience working with it.
Your primary care physician should be able to refer you to a neurologist. Neurologists who specialize in the clinical care of FTD, however, are rare. Many of the centers listed on AFTDs regional resource pages are directed by a neurologist and will have medical staff, including neurologists, with a special interest in FTD. These centers primarily see patients for an initial diagnostic evaluation, or second opinion, with subsequent follow up appointments often related to participation in a research project. They may not offer routine office visits or provide clinical care as-needed. If that is your primary medical need, be sure to ask the center nearest you whether they provide access to neurologists or physicians for ongoing or as-needed clinical care.
The same is true of all federally funded Alzheimers Disease Research Centers in the U.S. These centers are more likely to have medical staff that specializes in Alzheimers disease rather than FTD. Regardless, the overlap between the two makes the ADRCs an important resource for people coping with either disease.
How To Read The Signs Of Distress
Like anyone, someone living with dementia can have bad days. Only around a third of people with living dementia display aggressive behaviour. This is because they might find it hard to recognise and understand their needs. This can include dealing with pain, agitation, social anxiety, emotional upset or hunger. You may be able to prevent aggressive behaviour by spotting body language which indicates when someone with dementia needs help:
Repeatedly rub an area of their body
Looking scared or clenching their teeth
Are huddled, restless or have similar body language
Show a change in appetite
Have a high temperature, swellings or inflammations
Certain times of the day can be difficult for a person living with dementia. If you notice behaviours change as a task is being completed, consider if the job can be moved to another time or place.
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Driving And Work Problems
In 2009 Pat began having problems with her driving. In September she hit a car pulling out from a driveway and worryingly didnt stop. In December she drove through a roundabout and somehow rolled her new car over.
In 2010 problems increased at work. On July 27 she noted in her diary: J told me that my colleagues didnt have confidence in my abilities. Definitely going to resign in Dec. Sadly even working as a nurse in the NHS her employer didnt think that a rapid decline in her abilities after 35 years nursing might be due to illness.
Caring For A Person With Ftd
Caring for a person with frontotemporal dementia can be challenging and stressful at times because of the personality and behaviour changes experienced.
A major treatment imperative is to provide the spouse and other caregivers with key information, emotional support, strategies for managing behavioural changes and access to community resources. Without these tools, caregiver burnout is a significant risk and can have major adverse consequences, including poor health outcomes, for both the person with FTD and the caregiver.
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Providing Care For A Person With A Frontotemporal Disorder
People living with frontotemporal disorders, sometimes called frontotemporal dementia, can have a range of symptoms, including unusual behaviors, emotional problems, trouble communicating, and difficulty walking. Caring for someone with a frontotemporal disorder can be hard, both physically and emotionally. Caregivers may face challenges with managing the medical and day-to-day care, as well as changing family and social relationships, loss of work, poor health, stress, decisions about long-term care, and end-of-life concerns.
How Does Ftd Differ From Other Types Of Dementia
Dementia itself is not a disease but is an umbrella term covering a wide array of psychological and neurological disorders that affect memory, cognition, and behavior. The neurological conditions that come under this term usually worsen over time and have no cure as of yet. Frontotemporal dementia is considered one of the most common causes of dementia in individuals aged sixty and older but is often misconstrued with other forms of dementia.
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FTD itself is an umbrella term and covers a wide array of overlapping neurodegenerative disorders. FTD primarily affects the temporal and frontal lobes of the brain. The frontal lobe is responsible for executive functions of humans: the ability to pay attention, make appropriate decisions, multitask, think, and execute plans. This lobe also regulates motor function, impulse control, judgment, and personality. The temporal lobe, in contrast, manages the processes of memory, speech, and language.
It is typical for people with FTD to develop apparent symptoms in their 50s. However, that is not the case every time, as some people may even start exhibiting symptoms in their 20s or much later in their 80s. FTDs earlier onset compared to other dementias results in drastic implications: it may develop at a time when an individual is busy living his/her prime life and cripples responsibilities like family and work.
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Excerpt From What If Its Not Alzheimers
Part 2 INTRODUCTION: A Framework for Quality of Life with FTD
Sharon S. Denny, MA
A Framework for Daily Life
I didnt cause it. I cant change it, and I cant control it. But I do have choices about how to live each moment. . . . I will make life as enjoyable, dignified, and meaningful as possible for as long as I can.
Eleanor, caregiver for her husband
Not too long ago, people receiving a diagnosis of dementia were advised to get their affairs in order and prepare for the end. Public awareness of Alzheimers disease and other dementias and advocacy by people who are themselves diagnosed is starting to reduce past stigma and put more focus on living with the disease. Someone with FTD did nothing to cause the disease, and in the absence of much-needed treatment, cannot control its eventual outcome. But countless large and small choices will help you live as well as possible for as long as possible.
Consider How You Want to Live
Adjust Expectations
Someone with FTD will have more trouble focusing and interacting when they are tired or in an overly stimulating environment. Look for new ways to do things you enjoy and value. Adjusting expectations and planning activities and commitments accordingly will make it possible to stay engaged more effectively with fewer difficulties.
Develop a Positive Daily Routine
Be Prepared to Advocate and Educate
Do Not Go It Alone
Remember, the goal is to make each day as good as it can be.
Tips For A Healthy And Active Lifestyle For People With Dementia
Eating healthy and staying active is good for everyone and is especially important for people with Alzheimers and related dementias. As the disease progresses, finding ways for the person to eat healthy foods and stay active may be increasingly challenging. Here are some tips that may help:
- Consider different activities the person can do to stay active, such as household chores, cooking and baking, exercise, and gardening. Match the activity to what the person can do.
- Help get an activity started or join in to make the activity more fun. People with dementia may lack interest or initiative and can have trouble starting activities. But, if others do the planning, they may join in.
- Add music to exercises or activities if it helps motivate the person. Dance to the music if possible.
- Be realistic about how much activity can be done at one time. Several short mini-workouts may be best.
- Take a walk together each day. Exercise is good for caregivers, too!
- Buy a variety of healthy foods, but consider food that is easy to prepare, such as premade salads and single portions.
- Give the person choices about what to eat, for example, Would you like yogurt or cottage cheese?
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About A Caregivers Guide To Dementia
Although the public most often associates dementia with Alzheimers disease, the medical profession now distinguishes various types of other dementias. What If Its Not Alzheimers? A Caregivers Guide to Dementia is the first and only comprehensive guide dealing with frontotemporal degeneration , one of the largest groups of non-Alzheimers dementias. This thoroughly updated edition offers new daily-care ideas for caregivers to implement, reveals new discoveries of how genes and proteins are linked to the causes of dementia, explains the changes in terminology that have developed over the past several years, explores nonpharmacological approaches to managing care, and provides more guidance and resources to aid caregivers along this challenging journey. All contributors to this volume either are specialists in their fields or have exceptional hands-on experience with FTD sufferers. The wealth of information offered in these pages will help both healthcare professionals and caregivers of someone suffering from non-Alzheimers dementia.
What If Its Not Alzheimers?, 3rd Edition, is available on October 7, 2014. It can be found online, in print and e-book formats from major sellers such as Amazon and Barnes & Noble.