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Frontotemporal Dementia: Empowering Families Through Knowledge And Support

Updated: Jun 27, 2023

Frontotemporal Dementia (FTD) is a neurodegenerative disorder characterized by the progressive degeneration of nerve cells in the frontal and temporal lobes of the brain. It primarily affects behavior, language, and personality, and typically occurs at a younger age compared to other forms of Dementia.

Knowledge and support are vital for families affected by FTD. Understanding the condition, its symptoms, and available resources can greatly assist caregivers and family members in providing appropriate care and managing the challenges that arise.

Our blog aims to empower families facing FTD by providing valuable information and support. Through comprehensive resources, practical advice, and a supportive community, we strive to enhance their ability to provide care, improve their quality of life, and foster hope in the face of this challenging disease.

Understanding Frontotemporal Dementia

In Frontotemporal Dementia (FTD), the frontal lobes of the brain are responsible for regulating emotions, decision-making, and social behavior, while the temporal lobes play a crucial role in language comprehension and memory. As FTD progresses, these essential functions become impaired, resulting in noticeable behavioral and cognitive changes.

Common symptoms and behavioral changes

Common symptoms of FTD can vary depending on the specific area of the brain affected.

  • Behavioral changes are often prominent, with individuals experiencing alterations in their personality, social interactions, and emotional responses. They may exhibit apathy, disinhibition, loss of empathy, impulsivity, and changes in personal hygiene or eating habits.

  • Language difficulties are another hallmark of FTD. Some individuals may have difficulty finding the right words (referred to as expressive language problems), while others may struggle to understand spoken or written language (receptive language problems). This can lead to challenges in communication and social interactions.

Differentiating FTD from other types of Dementia

It's important to differentiate FTD from other types of Dementia, such as Alzheimer's disease. Unlike Alzheimer's, which primarily affects memory in its early stages, FTD primarily affects behavior, language, and executive functioning. Additionally, FTD tends to occur at a younger age, typically between 40 and 65 years old, whereas Alzheimer's is more commonly associated with older age.

Genetic factors and risk factors associated with FTD

Genetic factors play a significant role in some cases of FTD. Certain gene mutations have been identified as risk factors, and individuals with a family history of FTD may have a higher likelihood of developing the condition. However, not all cases are genetically inherited, and the exact causes of FTD are still being explored.

There are a few genes that are commonly mutated in FTD. These are:

  1. C9orf72 Gene Mutations: The expansion of a hexanucleotide repeat in the C9orf72 gene is the most common genetic cause of FTD and amyotrophic lateral sclerosis (ALS). This mutation leads to the production of abnormal RNA and dipeptide repeat proteins, which contribute to neurodegeneration. C9orf72 mutations can cause both the tauopathy and progranulinopathy subtypes of FTD.

  2. GRN Gene Mutations: Mutations in the GRN gene cause a deficiency of progranulin protein in the brain. Progranulin is involved in various cellular processes, including inflammation and cell survival. GRN mutations are associated with the progranulinopathy subtype of FTD, and individuals with these mutations may develop behavioral variant FTD, primary progressive aphasia (PPA), or corticobasal syndrome (CBS).

  3. MAPT Gene Mutations: Mutations in the MAPT gene lead to an abnormal form of the tau protein, which forms neurofibrillary tangles in the brain, a hallmark feature of FTD. These mutations are associated with the tauopathy subtype of FTD, and individuals with MAPT mutations often exhibit behavioral variant FTD or progressive supranuclear palsy (PSP).

It is important to note that not all cases of FTD have a clear genetic basis. There are sporadic cases in which the cause is unknown, and it is likely that a combination of genetic and environmental factors contributes to the development of the disease. Ongoing research in the field of FTD genetics aims to unravel the complex interactions between genes and other factors involved in the disease process, which may lead to better diagnostic tools and targeted treatments in the future.

Hereditary frontotemporal Dementia (FTD) arises from detrimental gene mutations that impact proteins crucial for normal brain cell functioning and survival. Among the mutation-associated hereditary FTD cases, three genes have been identified as the primary contributors:

C9orf72: This gene mutation is the most prevalent in hereditary FTD and ALS. Mutations disrupt the regulation and function of RNA, which serves as a template for protein synthesis. This disruption leads to an abnormal buildup of the TDP-43 protein.

GRN Progranulin: Mutations in this gene reduce the levels of progranulin, a protein involved in cell survival and inflammation regulation. Consequently, an abnormal accumulation of the TDP-43 protein occurs.

MAPT Microtubule-associated protein tau: Mutations in this gene disturb the structure and function of the tau protein, which plays a role in assembling and stabilizing the cell's internal structure. These mutations result in an abnormal accumulation of tau protein.

Although other gene mutations have been described, such as VCP, CHMP2B, FUS, and TARDBP, they are considerably rarer compared to the three mentioned above. In sporadic FTD, only a small percentage (less than 10%) of individuals have mutations in known FTD genes. Conversely, an estimated 10-15% of individuals with familial FTD possess a similar mutation.

In addition to genetic factors, the other risk factors associated with FTD are history of head trauma, certain protein abnormalities in the brain, and the accumulation of abnormal proteins, such as tau or TDP-43, which are characteristic of FTD.

Challenges Faced by Families

Frontotemporal Dementia (FTD) poses significant challenges for both individuals diagnosed with the condition and their families. These challenges encompass various aspects of daily life and can have a profound emotional, social, and practical impact.

Emotional Impact: FTD often leads to significant changes in the person's behavior, personality, and emotional regulation. Loved ones may witness their family members undergo a transformation, experiencing feelings of grief and loss as they navigate the shift in their relationship.

Communication Difficulties and Changes in Relationships: FTD can impair language comprehension and expression, making communication challenging. Loved ones may struggle to understand the person's intentions or may find it difficult to convey their own thoughts and feelings.

Practical Challenges in Daily Life and Caregiving: FTD often affects the person's ability to perform everyday tasks independently. This can include difficulties with personal hygiene, meal preparation, and managing finances. Caregivers may face practical challenges in providing care, balancing their own responsibilities, and ensuring the safety and well-being of the person with FTD.

Financial Implications and Available Support Systems: The financial implications of FTD can be substantial. Medical expenses, long-term care costs, and modifications to the living environment may pose financial burdens on families.

Empowering Families Through Knowledge

Empowering families affected by frontotemporal Dementia (FTD) through knowledge is a crucial aspect of providing support and enhancing their ability to cope with the challenges of the disease. By equipping families with information and resources, we can empower them to make informed decisions, advocate for their loved ones, and maintain their own well-being. Here are some ways you can empower families through knowledge:

  • Educating Families about the Disease

  • Raising Awareness of Treatment Options and Management Strategies

  • Providing Information on Clinical Trials and Research Advancements

  • Promoting Self-Care and Emotional Well-being for Caregivers and Family Members

Building a Supportive Network

Building a supportive network is essential for families affected by frontotemporal Dementia (FTD). The challenges and complexities of FTD can be overwhelming, but having a network of understanding individuals and resources can provide much-needed support. Here's how we aim to facilitate the creation of a supportive network:

Highlighting the Importance of Social Support: We emphasize the crucial role of social support in the FTD journey. By highlighting the impact of FTD on individuals and their families, we encourage the cultivation of supportive relationships.

Support Groups, Online Communities, and Local Resources: We provide information about support groups and online communities specifically tailored to FTD. These platforms enable individuals to connect with others who share similar experiences, exchange advice, and provide emotional support.

Encouraging Open Communication and Sharing Experiences: We emphasize the importance of open communication within families and with others who understand the challenges of FTD. By sharing experiences, families can find validation, learn from one another, and feel less isolated.

Offering Guidance on Finding Professional Help: We provide guidance on finding healthcare providers, specialists, and therapists experienced in working with individuals with FTD. Professional support is crucial in managing the physical, emotional, and cognitive aspects of the disease. We offer suggestions on how to find reliable professionals, including seeking recommendations, conducting research, and utilizing FTD-specific resources.

Practical Tips for Daily Living

When caring for someone with frontotemporal Dementia (FTD), practical strategies and tips can greatly assist in managing the challenges that arise in daily living. Here are some practical tips to consider:

Strategies for Managing Behavioral and Communication Challenges:

Maintain a calm and structured environment: Establishing routines and maintaining consistency can help reduce agitation and confusion.

Use clear and simple communication: Speak slowly and use simple sentences. Nonverbal cues and visual aids can also aid in communication.

Practice redirection: If the person with FTD becomes fixated or agitated, redirect their attention to a different activity or topic.

Avoid confrontations: It's important to pick your battles and not engage in power struggles. Focus on maintaining a peaceful and supportive atmosphere.

Creating a Safe and Stimulating Environment at Home:

Remove potential hazards: Ensure that the living space is free of obstacles, such as loose rugs or clutter, to reduce the risk of falls.

Simplify the environment: Minimize distractions and organize belongings to make it easier for the person with FTD to navigate their surroundings.

Provide engaging activities: Engage the person in activities that align with their abilities and interests. This can help reduce restlessness and promote a sense of fulfillment.

Assisting with Activities of Daily Living and Maintaining Routines:

Break tasks into manageable steps: Complex tasks can be overwhelming for someone with FTD. Break them down into smaller, more achievable steps.

Provide assistance as needed: Offer guidance and support while allowing the person to maintain independence to the best of their abilities.

Maintain familiar routines: Consistency in daily routines can provide a sense of stability and help the person feel more comfortable and secure.

Navigating Legal and Financial Matters for the Person with FTD:

Seek legal advice: Consult with an attorney experienced in elder law to address legal matters, such as power of attorney, guardianship, and advanced care directives.

Organize financial affairs: Set up a system for managing finances, including bill payments and monitoring accounts. Consider involving a trusted family member or financial advisor to assist.


While facing FTD can be challenging, it is important to approach the journey with hope and resilience. By staying informed, connecting with others who share similar experiences, and accessing available resources, families can enhance their ability to provide care, maintain their own well-being, and find strength in the face of adversity. Remember, you are not alone. At the Dementia Society of America®, let us continue to learn, support one another, and inspire hope as we navigate the complexities of frontotemporal Dementia.

The opinions of contributing authors are not necessarily those of the Dementia Society, Inc. We do not endorse nor guarantee products, comments, suggestions, links, or other forms of the content contained within blog posts that have been provided to us with permission, paid or otherwise. Dementia Society does not provide medical advice. Please consult your doctor.

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