Understanding Frontotemporal Dementia

When many people think about Dementia, they’re often unaware that there is more than one type of illness. In fact, there are over 400 types of Dementia, with Alzheimer’s Disease, Lewy Body Dementia and Vascular Dementia being the three most common.

The fourth most common type of the illness is Frontotemporal Dementia, and it gains its name from the lobes of the brain in which it presents: the Frontal lobe and the Temporal lobe. It’s estimated that between 5% and 10% of Dementia cases in Canada can be classified as Frontotemporal Dementia (or FTD). Among those living with what’s known as ‘young onset Dementia’ — in other words, people who receive a diagnosis before the age of 65 — around 20% of these individuals are living with FTD.

At Integracare Home Care, we provide a wide range of home health care services in Toronto and Mississauga. Our Caregivers receive frequent specialized training from the Alzheimer Society of Toronto. Through this ongoing exclusive partnership, our Caregivers understand the distinctions between the different types of Dementia and how to adapt the care that’s provided to suit individual needs based on specific diagnoses.

We recommend securing the help of specialized home healthcare providers educated and experienced in providing Dementia Care as soon as a loved one has received a Dementia diagnosis. We advise this for several reasons. One is that it empowers the person living with the illness to have a say in the care that they would like to receive. Another merit is that since our compassionate Dementia Caregivers will be with your loved one every step of the way, they can effectively advocate on their behalf, offering insights from a trained perspective as to behaviours and the efficacy of medications.

If you are supporting a close friend, a relative or a neighbour as they manage their Frontotemporal Dementia diagnosis, equipping yourself with knowledge of the different types, stages, and symptoms of Dementia will help you better understand the illness. Doing so empowers you to make educated decisions, allowing you to care for your loved one to the absolute best of your ability.

What Is Frontotemporal Dementia?

FTD — sometimes referred to as Frontotemporal Lobe Dementia — refers to a series of diseases that damage and affect neurons in the brain’s Frontal lobe (which is the largest lobe in the cerebral cortex, located directly behind the forehead) and the Temporal lobe (which sits behind the ears, and is the second largest lobe in the brain).

• The Frontal lobe is responsible for a wide range of personality-forming functions, including judgement, memory, dexterity and motor ability, creativity and free thought, analysis, and understanding social situations and social cues.
• The Temporal lobe is responsible for processing and regulating emotions, language comprehension, the storage and retrieval of memories and handling sensory messages.

Frontotemporal Dementia causes damage to the brain cells of those living with the illness in multiple ways. In some cases, the brain cells in these lobes atrophy; for others, they swell in size. Further, approximately 50% of those who are diagnosed with FTD have an accumulation of an abnormal type of protein called Tau in the Frontal and Temporal lobes.

What Causes Frontotemporal Dementia?

The medical field is currently unsure about what causes Frontotemporal Dementia. Some researchers have linked subtypes of FTD to the mutation of certain genes, but genetic causes are only hypothesized to account for about 10-30% of FTD cases. Researchers have also observed the presence of Pick bodies (tangles of Tau proteins within cells) inside the brains of people who have FTD. The buildup of Tau proteins causes neurons to die and for damage in the brain to accumulate, leading to the development of Frontotemporal Dementia symptoms.

Frontotemporal Dementia: Signs and Symptoms

As with the most common types of Dementia, individuals receive a diagnosis of Frontotemporal Dementia via the ways it first presents itself and through the most prominent Frontotemporal Dementia symptoms. Common Frontotemporal Dementia symptoms will vary between cases and can be categorized into behavioural symptoms, physical impairments, and challenges with communication.

The most common symptoms of Frontotemporal Dementia are behavioural — some of which can be quite extreme. For this reason, Frontotemporal Dementia may be misdiagnosed as schizophrenia or severe depression.

Frontotemporal Dementia symptoms may include behaviours such as:

• Obsessive or compulsive actions.
• Apathy or reclusiveness.
• Decreased motivation.
• Fluctuations in mood — which can be severe.
• Loss of inhibition leading to inappropriate social behaviours.
• Outbursts of laughter or tears.
• Stunted emotions.
• Reduced judgement.
• Indifference to personal hygiene.
• Radical changes to eating habits, including overeating and eating a poor diet.

Individuals living with Semantic Dementia or Progressive Agrammatic Aphasia (PPA), two specific types of FTD, may start to display difficulties with their communication, speech and language skills.

Frontotemporal Dementia symptoms that relate to communication may present as such:

• Struggling to find words.
• Misunderstanding the meaning of words.
• Increasing inability to read or write.
• Stuttering.
• Speaking less, or not at all.
• Making sounds instead of forming words.
• Speaking slowly.

Symptoms of Frontotemporal Dementia may also see an individual experiencing challenges with their motor skills. Motor challenges for those with Frontotemporal Dementia are similar to those experienced by people living with Parkinson’s and may include:

• Tremors.
• Balance and coordination challenges.
• Muscle twitches or spasms.
• Trouble swallowing.

The 7 Stages of Frontotemporal Dementia

FTD is a progressive illness, meaning that the symptoms accelerate over time. There are 7 stages of Frontotemporal Dementia.

Once again, Frontotemporal Dementia symptoms will vary between individuals, as will the timeline and the progression of Dementia symptoms. Some may stall at one stage for many years, while others will quickly move through the seven stages.

1. Early Stage:

Here, people living with FTD may not receive a diagnosis — or an accurate diagnosis — as the Frontotemporal Dementia symptoms are very minor. Some individuals may begin to struggle to find words, and some antisocial behaviours may manifest. Regrettably, such mild symptoms can leave family members and loved ones at odds with the individual as they assume a switch in social behaviour is simply the person misbehaving.

2. Cognitive Challenges:

In the second stage of Frontotemporal Dementia, people may still only show mild symptoms, including stumbling over words, struggling to put together a sentence and slight forgetfulness. From an outsider’s perspective, these changes may be attributed to age or poor memory; however, those close to the individual may begin to worry.

3. Heightened Difficulty with Language:

At stage three of Frontotemporal Lobe Dementia, one of the middle stages, people living with the illness may experience consistent challenges with their language skills — including struggling to piece together sentences and remembering words or terminology. Poor tact and a decline in their motivation, partnered with reduced social etiquette, can often cause challenges in their workplace or during social gatherings.

4. Day-to-Day Life Is Affected:

As Frontotemporal Dementia stages progress, complex language skills may begin to falter, and symptoms seen in other types of Dementia — such as memory loss — may present.

Further, language skills and behavioural challenges make it very difficult for the person to lead the life they were once used to. Sometimes, in these cases, they may not know that they are experiencing these symptoms, making it very challenging for family members to navigate finding help and support.

As mentioned, we do advise that those living with any form of Dementia seek help early in their diagnosis so that they can have a say in their care. However, we understand how it can be difficult to do so for all involved when the symptoms of Frontotemporal Dementia are unaddressed or unclear to the individual living with the illness. We are always happy to speak with you about the process or to provide a free in-home assessment, during which we can discuss our professional home care services, our expertise in Dementia Care and how we can work with you to navigate your unique situation.

Stage 5: Mid to Late Stage

In the mid to late stages of FTD, your loved one may struggle to make decisions while experiencing further difficulties with language and memory impairment. For this reason, it’s at this stage that help may be needed with some Activities of Daily Living (ADLs).

The most prominent Frontotemporal Dementia symptoms at this stage are the extreme alterations in behaviour — including frequent mood swings and massive personality changes, which are more severe than those seen during the early stages of the illness.

6. Memory Decline

At stage six, FTD begins to merge with the symptoms seen in Alzheimer’s (its effects on an individual’s memory are very similar). The person will become reclusive and introverted. They may also experience physical challenges with their balance alongside rigidity or tremors in their joints and muscles.

During this late stage, the person will need round-the-clock care as ADLs — including bathing, eating, and cleaning — will be impossible to achieve alone. One of the benefits of Personal Support Workers is that they can help our Clients with ADLs while providing compassionate, knowledgeable and dependable support to both you and your loved one. We carefully partner Caregivers with our Clients based on their likes, needs, abilities and interests. This attention to detail and personalized touch ensures our Clients’ optimal well-being.

7. The Final Stage of Frontotemporal Dementia

During the last Frontotemporal Dementia stages, those living with FTD will experience severe cognitive decline, making living alone impossible. Frontotemporal Dementia is not a fatal illness. However, the symptoms make individuals more prone to other risks, including a severe fall or pneumonia.

Understanding these stages, the symptoms, and what to expect with Frontotemporal Dementia will allow you to support your loved one effectively.

Are Certain Demographics Predisposed to Frontotemporal Dementia?

At this point, the correlation between who Frontotemporal Dementia affects and why is somewhat unclear, though it is understood that genetics play a role. According to a study by Penn Medicine:

“Approximately 40% of individuals with FTD have a family history that includes at least one relative who also has or had a neurodegenerative disease. In approximately 15%–40% of all FTD cases, a genetic cause (e.g., a gene mutation) can be identified as the likely cause of the disease. In most cases, it is an inherited mutation.”

Since no test is designed explicitly for FTD, medical professionals compose a picture of the symptoms to help with their analysis, thus allowing them to achieve a Frontotemporal Dementia diagnosis. This includes:

• Testing an individual’s mental abilities.
• Running blood work.
• Talking with loved ones and Caregivers to gather and compare their observations.
• Scheduling MRIs or CT scans.

This allows them to narrow down to a final diagnosis.

Frontotemporal Dementia Treatment: On a Personal Level

Knowing how to care for someone with FTD can be challenging, especially if you’ve never been in the position of helping someone with a life-altering illness.

Seeing a person you love experience a mental and physical decline is heartbreaking. There are some ways for you to modify how you engage with your loved one and how you manage some day-to-day tasks, helping both you and them.

First, if you are caring for someone who’s living with FTD, remember to be patient — both with your loved one and with yourself. These are unchartered waters. The senior in your charge may behave in unruly ways at times, but know that it’s not them; it’s the illness.

Frontotemporal Dementia Treatment: Professional Care

As with other types of Dementia, there is no cure for FTD. There are, however, some medications that may provide relief from some of the symptoms — such as irritability or depression. A family doctor will be able to advise you on medication and other Frontotemporal Dementia treatments.

There are also some activities you can undertake at home with your loved one that may slow the progression of the illness, delaying cognitive decline and maintaining a higher quality of life for longer.

Memory and brain training exercises and stimulating physical activities can help. Some ideas for at-home exercise include:

• Physical exercise: try low-impact chair yoga and gardening. Both of these can boost a person’s mood and their confidence. Exercise can also boost a person’s bodily awareness and their immune system.
• Daily crosswords, jigsaws and word searches can all help keep the brain active.
• Art therapy: painting, drawing and scrapbooking benefit those living with FTD. Art therapy can delay cognitive decline while providing an individual with a soothing, therapeutic activity.
• Dancing to nostalgic music: Not only may listening to old music conjure up good memories and emotions, but it’s also a great way to maximize an individual’s likelihood of retaining muscle mass, balance, and dexterity.

Adjusting how you’d regularly communicate will also help. Slow your speech and speak clearly, leaving ample time for responses. Use visual tools, when possible, like pictures or props.

Lastly, consider the surroundings. As discussed, symptoms of Frontotemporal Dementia may include challenges with balance, muscle spasms, tremors, and rigidity. Each of these impairments may lead to trips or falls. Lightly rearrange the furniture in your loved one’s home. Don’t move furniture so the room is unrecognizable: one of the merits of being at home is familiarity and comfort. Instead, ensure there are no tripping hazards or pieces of furniture in the way should your loved one need walking aids.

Further, contemplate securing assistive devices to make the home more comfortable, like bath seats, Hoyer lifts and hospital beds. Here at Integracare Home Care, we can gladly aid our Clients and their families in procuring necessities such as these.

Frequently Asked Questions About Frontotemporal Dementia

How Do You Get a Frontotemporal Dementia Diagnosis?

FTD can be a difficult disease for doctors to diagnose. Many of the symptoms overlap with other diseases, and the disease is comparably rare, meaning physicians may not be as familiar with the disease or think of it first when observing other symptoms. A physician will likely talk to family members, perform an exam, look at personal and family medical history, and use tests that rule out other conditions, but a diagnosis can only be confirmed with a brain autopsy after a patient passes.

What To Expect with Frontotemporal Dementia?

FTD is a progressive disease, meaning that the effects are likely to become worse with time. There are steps you can take to delay progress, but you should expect the gradual loss of the person’s ability to speak, their control over their own behaviour, and the ability to comprehend others when they speak. Memory loss also worsens in the later stages of the disease.

What Are the First Signs of Frontotemporal Dementia?

There are several early signs of FTD. It can be difficult to distinguish some of these from other conditions, but they include:

• Apathy, lack of interest, or lack of motivation.
• Loss of inhibitions, socially unacceptable behaviours, or making inappropriate comments.
• Compulsive behaviours such as repetitive movements that are out of their control.
• Loss of executive function when it comes to planning or completing tasks.
• Diet changes including a habit of eating things that are not food.

Does Frontotemporal Dementia Affect Memory?

FTD eventually affects memory and the ability to process information, but this is a symptom that tends not to materialize until the later stages of the disease.

Consider Specialized Care

Understanding Frontotemporal Dementia symptoms, the stages of FTD and how to help your loved one can be extremely intimidating. So let us help; Integracare Home Care has proudly offered quality, compassionate, personalized Dementia Care in our Clients’ homes for over 30 years.

We offer a personalized and multipronged approach to Dementia Care, factoring in our Client’s personal situations every step of the way while ensuring their absolute comfort (both mental and physical), their safety, and their dignity.

In addition to providing person-centred Home Care — where our Personal Support Workers help our Clients with their ADLs while providing companionship (and more) — we also work with trained Massage therapists, Physiotherapists, and Registered Practical Nurses who understand the intricacies of Dementia Care.

We can work with you to customize a dynamic plan that will increase the quality of life for your loved one while allowing you to focus your energies where they’re needed most — being there for them. Connect with us today to learn more about how we can help.