Caring for Someone with Frontotemporal Dementia (FTD)
Whether frontotemporal dementia (FTD) affects you directly or someone you love, it often marks the beginning of a journey filled with change, uncertainty, and many questions. Routines begin to shift, communication becomes more difficult, and roles within the family may start to change. For many people, it is not just the medical diagnosis that feels overwhelming, but the emotional impact that comes with adjusting to a new and evolving reality.
Frontotemporal dementia often affects people at a younger age than other dementias, typically between ages 45 and 64. FTD is mostly diagnosed in people under 65 but can affect younger and older adults. Men and women appear to be equally affected by frontotemporal dementia. That is why understanding frontotemporal dementia is so important, and participating in support groups can enhance this understanding . Because when you understand what is happening and why, it becomes easier to make sense of the changes you might be noticing. It helps you respond with compassion instead of confusion. And it gives you something to hold on to when so much else feels uncertain. Frontotemporal dementia is the most common early presenting dementia after Alzheimer's disease.
Frontotemporal dementia does not follow one clear path, and understanding the symptoms can help you navigate this journey. It can affect people in very different ways depending on which areas of the brain are involved. Some people experience changes in personality or behaviour, while others notice difficulties with language or movement. The first noticeable symptoms of FTD, such as personality changes, behavioral issues, or language difficulties, can be subtle and easily missed. FTD is progressive, meaning symptoms worsen over time, and symptoms progress at a rapid, steady rate.
The underlying causes of frontotemporal dementia are not yet fully understood, but abnormal protein accumulations in the brain are involved. Common symptoms of FTD include behavioral changes, emotional withdrawal, and trouble using or understanding language. These noticeable symptoms may differ from those seen in other dementias, helping families recognize FTD earlier. The confusion between Alzheimer's disease and frontotemporal dementia is justifiable due to similarities in their initial symptoms. This variety is one of the reasons why FTD can be so challenging to recognise and respond to. But it is also why personalising care and support can make such a difference. Because no two people experience dementia in exactly the same way.
Knowledge and empathy help create a more supportive environment for people living with FTD. Whether you are just beginning to come to terms with a diagnosis or looking for practical ways to provide comfort and stability, our aim is to help you feel more informed and less alone. Because while the journey ahead may be challenging, there are still many moments of connection, meaning and joy to be found.
Recognising the Early Symptoms, Signs, and Changes
Recognising the early signs of frontotemporal dementia, especially in the early stages, can be difficult. Often, the changes begin subtly—a shift in someone’s personality, unusual behaviour, or growing difficulty with language. Behavioral symptoms are often among the first noticeable signs, especially in the behavioral variant of FTD. These changes might appear gradually over months or even years, which can make it hard to know when something is truly wrong.
Diagnosing FTD can be challenging because its symptoms are often similar to those of other dementias and other neurodegenerative diseases. Symptoms of frontotemporal dementia can sometimes be mistaken for those of Alzheimer's disease, and symptoms similar to movement disorders like Parkinson's disease or ALS may also occur. Frontotemporal dementia is distinct from other dementias and other neurodegenerative diseases, but can sometimes be mistaken for them due to overlapping symptoms. But noticing these early signs, especially those related to the frontal and temporal lobes, is important. Because the sooner you understand what is happening, the sooner you can find support, reduce uncertainty, and begin making decisions that protect your loved one’s comfort and dignity.
Some of the most common early indicators include repeated or compulsive behaviours, changes in social awareness, increasing forgetfulness, or struggling to find the right words. In some cases, people may show reduced empathy or begin acting in ways that feel out of character. As symptoms progress, physical changes may also appear—such as muscle weakness, changes in gait, movement symptoms, or difficulties with swallowing. As the disease progresses, symptoms may become more pronounced and diverse.
The brain regions affected by FTD influence which symptoms appear, and symptoms depend on the specific areas involved. While these changes can be distressing to witness, they also offer an opportunity: a chance to strengthen emotional bonds, respond with compassion, and plan together for what lies ahead. Many families find it helpful to keep a journal or record of behavioural changes, both as a way to track symptoms and to create a sense of continuity with the person’s life story. The first step to having frontotemporal dementia diagnosed is often recognizing subtle changes that may not be obvious in early stages. The behavioral variant (previously called Pick's disease) is characterized by prominent behavioral symptoms.
Medical professionals use a combination of assessments to diagnose FTD, including a physical examination, review of medical and family history, neuropsychological tests, brain scans such as magnetic resonance imaging, and genetic testing. A detailed medical history is essential for accurate diagnosis. Neuropsychological tests assess memory, problem-solving, attention, and language abilities. Brain scans such as structural MRI often reveal frontal lobe and/or anterior temporal lobe atrophy in FTD patients. Cerebrospinal fluid (CSF) biomarkers can also be useful in diagnosing FTD. These tools matter, but so does what you notice day-to-day. Because no one knows your loved one better than you do. Early recognition, particularly concerning the temporal lobe, is not about focusing on what is being lost—it is about creating space for understanding and preserving the things that matter most.
Creating Comfort Through Familiar Routines and Activities
Daily routines can provide more than just structure, they offer stability, emotional safety, and a sense of control, which can support language skills. For someone living with frontotemporal dementia, familiarity becomes a powerful form of reassurance, especially when other aspects of life start to feel unpredictable or confusing. Small, everyday rituals, like having a morning cup of tea in a favourite chair, listening to a well-loved radio programme, or going for a walk at the same time each afternoon, can help ground a person in their day. These routines are especially helpful for individuals whose symptoms arise from changes in the frontal and temporal lobes of the brain, or more generally, the lobes of the brain affected by FTD. Because when so much is changing internally, particularly with conditions like primary progressive aphasia, other common forms of FTD include semantic dementia, which affects understanding of word meanings, and progressive nonfluent aphasia, which impacts speech production. The predictability of routine becomes something to rely on.
Routines also help maintain identity. A person who has always taken pride in setting the table, folding laundry, or preparing a simple meal may still find comfort and purpose in those activities, even as their abilities change. The behavioral variant of FTD, also known as behavioral variant frontotemporal dementia, is another common form that primarily affects personality and social behavior.
Familiar sensory experiences can also be deeply soothing. The texture of a soft jumper, the scent of a favourite hand cream, or the sound of birds outside the window can all play a role in helping someone feel more at ease. These small moments are not incidental—they are essential. Common symptoms of FTD, such as changes in behavior, language, or movement, can be addressed through personalized routines.
While there is currently no cure for frontotemporal dementia, supportive therapies such as speech and language therapy, occupational therapy, and gentle physical activity can help maintain comfort and quality of life. These interventions work best when they’re woven into daily routines and personalised to reflect the person’s interests and preferences. Supportive therapies can also help manage symptoms across different variant frontotemporal dementias.
Maintaining Meaningful Connections and Identity
A diagnosis of frontotemporal dementia can gradually change how a person expresses themselves, but it does not change who they are at their core. That is why maintaining meaningful connections—and honouring a person’s identity—is such an important part of care. Even as language fades or behaviour shifts, emotional connection remains possible. Some individuals may also develop compulsive behaviors, which can further impact how they interact with others and express themselves. A familiar voice. A shared look. Holding hands. These simple gestures can carry deep meaning, even when words no longer come easily. Because being recognised, remembered, and loved helps a person feel like themselves—even in the midst of change.
Photographs, treasured objects, and music from earlier years can all help spark memory and connection. For some, hearing a song from their youth may bring a smile or moment of calm. Others may feel comforted by the scent of a familiar perfume or the touch of a favourite jumper. These sensory cues do more than soothe—they help anchor someone in their story. Engaging in activities that reflect a person’s past, gardening, painting, listening to the football results, baking, or simply watching a favourite television programme, can all help preserve identity. Because these aren’t just pastimes. They are reflections of a life lived, full of meaning and history.
It is also important to recognise that identity continues to evolve. Someone may respond to different things as their needs change, and adapting with them is part of what keeps the connection strong. The goal is not to “bring them back” to who they were, but to meet them where they are now, with empathy and patience.
Supporting Family Bonds and Communication
When a loved one is living with frontotemporal dementia, maintaining strong family relationships can bring deep comfort—not just for the person affected, but for everyone involved. As communication becomes more challenging, the way we connect often needs to change. But the connection itself remains just as important.
Many families worry about saying the right thing, or not knowing how to respond to changes in behaviour or language. But what matters most is being there with warmth and patience. Because even when words are lost, feelings are still felt. And relationships continue to offer meaning and reassurance. Small shared moments can be powerful. Sitting together in a favourite chair. Listening to familiar music. Sharing a quiet meal. These gentle interactions often speak louder than conversation, especially in later stages of the condition. Because connection does not always require words, it just requires attention.
Family members may find that different ways of communicating become more effective over time. This might include using gestures, photographs, touch, or simply maintaining a calm, familiar routine. Adapting how we interact is not about giving up, it is about finding new ways to keep the relationship strong. It can be helpful to create spaces that feel welcoming and unhurried. Having comfortable places to sit, soothing background music, or familiar objects nearby can help ease tension and invite interaction. Encouraging visits from children, friends, and extended family, where appropriate, can also support a sense of belonging and connection to the wider family network.
Finding the Right Balance Between Managing Symptoms, Care, and Independence
Supporting someone with frontotemporal dementia often means making daily choices that balance two equally important needs: safety and independence. As the condition progresses, more support may be required, but preserving a sense of autonomy remains just as vital. Even when memory, movement, or language begins to change, the desire to make choices and feel in control doesn’t disappear.
Finding this balance can take time, and it often involves gentle adjustments. It might mean offering fewer, simpler choices at mealtimes. Encouraging a loved one to dress themselves, even if help is needed with fastenings. Or creating a safer space at home so they can move freely without risk. These small adaptations allow a person to remain active in their own life. When someone is included in their daily routine, rather than passively cared for, they are more likely to feel respected, capable, and connected to their identity.
When you come to the stage of choosing to move to a specialist dementia care home the support they provide doesn't have to mean restriction. In fact, thoughtful care often opens up new possibilities, helping people continue activities they enjoy, just in a safer or more manageable way. Whether it’s baking with supervision, taking part in a short walk, or helping fold laundry, these tasks can offer both purpose and pleasure. Planning ahead, and checking in regularly about what feels manageable, helps avoid sudden decisions or unnecessary frustration. Families, carers and professionals can work together to find a rhythm that feels right. One that offers reassurance without removing independence. One that provides safety without erasing choice.
The Benefits of a Specialist Dementia Care Home
A diagnosis of frontotemporal dementia can feel like a loss of certainty, but with the right support, it can also become a starting point for a different kind of care. One rooted in understanding, empathy, and dignity. When families feel informed and supported, decisions become less overwhelming. Moments of connection feel more possible. And the person at the centre of it all continues to feel seen and valued, not defined by their condition. Because knowledge doesn’t just help with planning, it brings peace of mind.
Comprehensive support means more than medical care, particularly in regard to the frontal lobe. It includes emotional guidance, personalised daily routines, meaningful activities, and environments designed to feel safe and familiar. It also means recognising the person behind the diagnosis, and tailoring care to reflect who they are, not just the symptoms they face. Frontotemporal dementia is treated with a focus on managing symptoms and improving quality of life, often involving a multidisciplinary healthcare provider team in a care home.
While there is currently no cure, these advances remind us that there is still progress—and still purpose. No one should have to navigate this journey alone. Whether you’re supporting a loved one or exploring care options for the future, our team is here to help. We offer tailored support for individuals living with frontotemporal dementia, with a strong focus on comfort, connection and continuity of care.
If you would like to speak to someone about how we can support you or your family, please get in touch with our friendly team at Aspen Court Care Home in Taunton. We’re here to listen, answer your questions, and help you find the right way forward.