What is Frontotemporal Dementia?
Frontotemporal dementia (FTD) is a type of dementia that typically affects individuals under the age of 65. FTD affects the frontal and temporal lobes of the brain. These lobes are responsible for a person's behaviour and personality. As such, FTD might affect a person's behaviour and personality, speech, and mobility.
Who is affected by FTD?
Men and women can be affected by FTD, and people diagnosed with FTD are typically aged 40-45. It is still unclear as to how individuals develop FTD, some reasons can be due to a genetic mutation and in the rare cases, FTD can be inherited.
How can a person with FTD continue to live well?
Individuals who are diagnosed with FTD are often much younger than individuals diagnosed with other types of dementia and this can lead to different challenges. For many, individuals with FTD are still working, supporting their families and children, and have many responsibilities. As with many forms of dementia, their driver's license is often lost due to diagnosis. This poses a variety of changes for individuals living with FTD. What is important is maintaining involvement in tasks and having a regular routine.
Some individuals living with FTD might have to take a step away from work and from other duties, as they progress along their dementia journey. However, this does not mean individuals living with FTD must retract from their community. It is important to stay involved, physically, socially, and mentally. Participating in physical activities that they have always done is important to maintain their physical abilities. Participating in social activities is also very crucial for persons with FTD as they can maintain their social skills and still engage with others. Lastly, it is also important to maintain cognitively stimulated and exercise your brain.
There are many ways to stay involved. While many adult day programs for persons with dementia are catered for older adults, there are different options for persons with FTD to socialize. For example, persons with FTD can volunteer in their community or join a group. We love the YODA program and their involvement and advocacy work in our local area. We also recommend the Golf-Fore-Life program in the Kitchener region, this is both a social and physical program for persons living with dementia. Check out other adult day programs in your area and see if they are the right fit for you. Some programs have a younger clientele, attend different programs to find the best one that suits your needs.
It's essential to maintain physical activity, as this helps to improve quality of life, boost your mood, and stay physically engaged. If individuals with FTD participated in sports prior, it's important to remain integrated in that activity or try out new activities. Engage in a regular exercise routine, even if it's just walking, to get out of the house and stay physically active. Have a friend, teammate, or family member offer a ride for you and schedule physical activities into your daily calendar.
What can you do to support a person living with FTD?
While there are many changes that might occur for persons with FTD, it's important to support the person and be there for them. While their personality and behaviour might change over time, they are still that person that you've come to know and it's important to treat them the same way.
Maintain your relationship
Engage in similar activities as you did before they were diagnosed. This makes it easy to engage and converse. If a person's behaviour changes, it's critical to keep in mind that it is not their fault, it is the diagnosis that might affect their behaviour. Many individuals often refer to dementia as the 'uninvited guest', which is quite relatable. While the guest might not be invited over, know that they are there to stay and learn to work with them. Practice different skills that might allow you to connect in a different way. It's important for persons with FTD to know that you are there to support them in the same way that you always were and remind them that it is not their fault and be open with them.
Stay socially connected
You might face challenges connecting socially with a person with FTD as their behaviours and speech might change. Find ways that spark social connections and you might find this gets easier if you know how to approach conversations. Storytelling is always a great way to start conversations, as most individuals are able to reflect on their memories, but might face difficulties expressing themselves. By sharing a story of certain memories with a person with FTD, it will help them reflect and initiate a conversation. Or, tell a story about your day and events that took place, this might spark other conversations. Another way to stay socially connected is by engaging in activities with them. Some ways are to share in games, movies, crafts, etc. to stay socially engaged but also maintain their cognitive stimulation and keep their brain active too. One of the best ways to support persons with FTD is through social connection. It is through this process that individuals have to process what is being said in the conversation, understand this knowledge, and then form a response that adds to the conversation. While it might take a little bit longer to engage, know that this activity is very important in maintaining their brain health.
Establish a support network
It is important to not only care for the person with FTD along their dementia journey, but also to take care of yourself. Establish a support network and reach out to others who are experiencing a similar situation. Include your family, friends, paid care partners, and neighbours in your support network and work together to provide your loved one with the best care.
Develop a routine
Your loved one with FTD might face challenges engaging in a routine if they are no longer working, driving, or partaking in daily tasks that they might have previously done. Develop a routine for your loved one and create a schedule of activities to maintain their involvement in daily tasks. Persons with dementia are best supported if they are in a familiar, regimented environment so that they can maintain a sense of accomplishment and dignity. If they choose to participate in an adult day program, schedule that into their calendar. If they participate in physical activities twice a week, schedule that into their calendar. If they have specific times to take medications, engage in speech therapy or physical therapy, schedule this into their daily agenda so they are reminded of the tasks for the day. While individuals living with FTD might face challenges expressing themselves, they are still cognizant of time and establishing a routine will help them stay on track.
How can we better educate ourselves on FTD and other early-onset dementias?
When people hear the word dementia, they often think of older adults, end-stage dementia, and long-term care homes. However, many individuals living with dementia are younger than we typically think and are living well in their own communities. It is important to educate the community on what dementia might look like, challenge the stigma that surrounds it, and implement best practices for persons with dementia to live well.
If you are out in public and notice that individuals are looking at you, not knowing how to engage, or using stigmatizing language, offer them one of our resource cards and educate them that dementia looks different for every person. This might help to improve their customer service skills and raise awareness on FTD.
Another way to educate ourselves and others is through educational sessions by the Alzheimer Society. These sessions help inform individuals on the signs and symptoms, ways to cope, and resources available. Reach out to your local Alzheimer Society for sessions available in your community.
If there are little resources available in your community for your loved one with FTD to stay involved, approach your local MP, your city, or your local Alzheimer Society and request more inclusive programs for persons with FTD. Together, we can create opportunities that support persons living with any type of dementia and help to improve their quality of life.
Alzheimer Society of Canada. (2018). Frontotemporal dementia. Retrieved from https://alzheimer.ca/en/Home/About-dementia/Dementias/Frontotemporal-Dementia-and-Pick-s-disease
Mayo Clinic. (2016). Frontotemporal dementia. Retrieved from https://www.mayoclinic.org/diseases-conditions/frontotemporal-dementia/symptoms-causes/syc-20354737