Frontotemporal dementia (FTD) is a progressive neurological condition that affects the frontal and temporal lobes of the brain, causing changes in behaviour, personality, and language abilities. Unlike Alzheimer’s disease, which primarily affects memory, FTD often begins with changes in behaviour and personality, and later on impacts speech and language. Because of these changes, supporting individuals with FTD can be challenging, but there are ways to help them maintain a good quality of life.
Here are some tips on how to support people with frontotemporal dementia:
Learn about the condition
Frontotemporal dementia can be a confusing and challenging condition to understand, but educating yourself about it can help you provide better care for your loved one. Learn about the symptoms, stages of the disease, and the best ways to communicate with someone who has FTD.
A 2010 study showed that amyotrophic lateral sclerosis (ALS) is a condition in which the lower motor and pyramidal neurons degenerate, resulting in a loss of voluntary muscle movement. The presence of common molecular pathological and anatomical characteristics in both frontotemporal dementia (FTD) and ALS indicates a strong connection between the two disorders. FTD may develop before ALS in some patients, while ALS may occur first in others, and in some cases, the two disorders begin at the same time. The association between ALS and FTD poses particular challenges for family caregivers.
Create a supportive environment
Individuals with FTD often have difficulty adjusting to new environments and situations, so creating a calm and supportive environment is essential. This can involve minimising noise and distractions in the home, keeping the home familiar, and establishing consistent routines.
Anna Sergent, a trainee psychoanalytic psychotherapist, explained: “It is important to remember that the environment has to be adjusted to the person’s needs and not the other way around. The needs and the way that the person functions may vary from day to day or change the same day even so it is important to adopt a flexible approach.”
Anna suggested the following:
- Make the environment as predictable as possible to lower anxiety as much as possible. If the person is comfortable with it plan each day an evening before or in the morning. You could also put together a timetable that the person goes back to if they are unsure of what comes next. Developing a specific routine may be a very important element to day to day functioning of the person.
- Name things around the house so that the person does not need to ask whenever they forget a particular word. Involve the person in naming it and ensure that this is what they need and want.
- Play the music that brings back happy memories to the person or have a singing session together. For example, singing and simultaneously clapping or tapping the rhythm together can help the person to calm down.
- Scents that have calming effects on the person can help too, even if it is the smell of baking. It does not need to be aromatherapy to trigger positive memories.
- Plan activities that the person knows well and likes. Even if they forgot how to do something, gently remind them without showing your surprise.
- Prepare the person if they need to attend an appointment or visit a new place. Showing them pictures of the place or explaining step by step what is going to happen may help to lower their anxiety and increase confidence. Patiently answer their questions even if it is the same question that they ask.
Be patient and understanding
One of the biggest challenges of supporting someone with FTD is understanding the changes in behaviour and personality that come with the disease. Individuals with FTD may act out of character, say inappropriate things, or engage in impulsive behaviours. It’s important to remember that these behaviours are a result of the disease and not intentional, so patience and understanding are key.
Communicate effectively
Individuals with FTD often struggle with language and communication, so it’s important to communicate in a clear and concise manner. Use simple language and avoid abstract concepts, and be patient while waiting for a response.
Social isolation can have a negative impact on an individual with FTD, so it’s important to maintain social connections. Encourage your loved one to participate in activities they enjoy, and consider joining a support group for caregivers to connect with others in similar situations.
Help with daily activities
As FTD progresses, individuals may have difficulty with activities of daily living such as cooking, cleaning, and personal hygiene. Providing assistance with these tasks can help your loved one maintain their independence and dignity.
Be flexible
As the disease progresses, the needs of your loved one will change. It’s important to remain flexible and adjust your care as needed. This can involve modifying routines, adapting to new behaviours, or seeking additional support from healthcare professionals.
Seek support from healthcare professionals
FTD is a complex condition that requires specialised care. Healthcare professionals such as neurologists, geriatric psychiatrists, and speech-language pathologists can provide valuable support and guidance throughout the disease process.
Take care of yourself
Caring for someone with FTD can be emotionally and physically exhausting. It’s important to take care of yourself, so you can continue to provide the best care for your loved one. This can involve taking breaks, seeking respite care, or joining a caregiver support group.
Be an advocate
FTD is a relatively rare condition, and there is often a lack of awareness and understanding among healthcare professionals and the general public. As a caregiver, you can be an advocate for your loved one and raise awareness about the disease. This can involve participating in research studies, sharing your experience with others, and advocating for better support and resources.
Final thoughts
supporting individuals with frontotemporal dementia can be challenging, but with patience, understanding, and the right tools, it is possible to provide high-quality care. By educating yourself, creating a supportive environment, communicating effectively, maintaining social connections, providing assistance with daily activities, seeking professional support, taking care of yourself, and advocating for your loved one, you can help them maintain a good
