We have gathered advice on a range of topics that may be useful for people affected by frontotemporal dementia (FTD)
This is not intended to be a complete directory of questions and answers. It is based on the most common questions we receive. If you have additional questions that are not mentioned below, please get in touch with us by emailing contact@aftda.org.au.
Whilst we have tried to ensure that all of the information on here is accurate, we cannot be held responsible for any errors or pieces of advice that you may disagree with. We strongly advise that you visit the appropriate organisations and resources for the most accurate and up-to-date information.
We acknowledge help from the AFTD and Rare Dementia Support websites, which you can find below. Both have excellent resources and we recommend them to you.
What is FTD.
Frontotemporal Degeneration (FTD) is a disease process that results in progressive damage to cells in areas of the brain called the frontal and temporal lobes. FTD is estimated to be the second most common cause of dementia in younger people (under 65) after young-onset Alzheimer’s disease.
FTD is actually an umbrella term for a range of disorders that impact on the brain in different ways. Broadly speaking there are considered to be three main types of FTD (1) behavioural variant (2) language variants and (3) those associated with a movement disorder. Detailed descriptions of the different types of FTD can be found at: https://www.theaftd.org/what-is-ftd/disease-overview
FTD typically affects people in their 40s and 50s, when few expect dementia. It can also occur in older and younger people. Distinct from Alzheimer’s disease, it causes dramatic changes in behaviour, personality, and/or language and movement. Memory is typically relatively preserved in FTD – at least at first.
Far too few people—including health professionals—know about FTD. It is often initially misdiagnosed as a psychiatric problem, a movement disorder such as Parkinson’s disease, or Alzheimer’s disease. As a result, many families endure a long journey to an accurate diagnosis – nearly four years, on average.
The first port of call is likely to be your General Practioner (GP). As a carer or family member it is important to be part of the initial GP visit. Don’t be afraid to ask for time to speak independently to the doctor about changes you have observed in your loved one.
It is likely your GP will refer you to a specialist in dementia: a geriatrician, neurologist, and/or a neuropsychologist. It’s important to find the right health care team who can support you through both the diagnostic process and ongoing care.
As yet there is no single test that can diagnose FTD with certainty in a living person. Doctors must make a diagnosis based on the person’s history, in particular, the history of changes in behaviour, personality, language and/or movement, together with the results of a variety of neurological, neuropsychological and brain imaging tests.
The information provided by family members can be crucial in helping to establish a diagnosis. Write down and be prepared to describe in detail any changes you have noticed. FTD is a rare dementia. Not all health professionals are familiar with the disease and it can be difficult to diagnose. Be prepared to advocate for your loved one.
A diagnosis of FTD can feel overwhelming. The American FTD association, the AFTD, has an excellent resource for individuals and carers facing a new diagnosis . It includes a link to their booklet, The Doctor Thinks it’s FTD. Now What? A Guide for Managing a New Diagnosis.
If you want more support and information, contact :
Dementia Support Australia helpline, 24 hours, 7 days a week: 1800 699 799
Dementia Australia helpline: 1800 100 500
A core role for the AFTDA is to advocate for support services for carers of those with FTD.
The AFTDA is currently working with Dementia Support Australia to develop and run a nationwide network of support groups called “Carer Conversations.” Carer Conversations for FTD carers will run monthly and be facilitated by experienced health professionals and dementia consultants. They are planned to commence around September 2024.
If you are caring for someone with FTD we are keen to hear from you. We invite you to lodge an expression of interest in the Carer Conversations via this link.
Or visit the Dementia Support Australia website to express your interest at https://www.dementia.com.au/carer-conversations
Some of the Carer Conversations will be conducted face to face, some will be virtual (via Zoom or similar), and some groups might use a hybrid model whereby people participate both in person and online. The groups will be located in most capital cities, and if you live in a rural or remote area, there is likely to be a “virtual” group available to you.
Please see our section on Support.
Please do not hesitate to contact us at AFTDA if you want more information about the Carer Conversations.
Dementia Australia also conducts FTD Carer Support Groups. To connect with these groups, please call the Dementia Australia helpline on 1800 100 500.
In Australia it is estimated that between 3500 – 11,500 people are affected by FTD.
When assessing the possibility that FTD could be inherited in your family it is important to first keep in mind that around 60% of FTD cases are sporadic. These sporadic cases of FTD occur in people without a known family history of dementia or neurodegenerative illness.
A small percentage of FTD cases are genetic, or hereditary, in nature. They occur when a parent passes a genetic variant associated with FTD to their child.
Genetic testing is the only way to know whether there is a genetic variant linked to FTD in your family.
Genetic counselling is available via healthcare networks, so General Practioners should be able to refer you to a local hospital for this service.
The following two links add further information.
https://www.theaftd.org/posts/help-and-hope/ri-familial-ftd
https://www.dementia.org.au/about-dementia/genetics-and-dementia
FTD causes changes in aspects of brain function. As a result of these changes people with FTD are often unaware of the changes in their behaviour and ability to do things. This is referred to as a lack of insight. Lack of insight is a common and often early symptom of FTD. It is commonly, but not exclusively associated with the behavioural variant. A lack of insight means that the person with FTD is unable to understand or appreciate the changes brought about by their illness, or the impact of their illness on others.
Lack of insight differs from denial, which is a coping mechanism employed to confront an unpleasant or painful situation. Lack of insight results from physical changes to the brain. People with this lack of insight may function normally in some areas of their lives yet engage in risky and seemingly callous behaviours because they do not recognise their actions as problematic.
Having a loved one who is unable to appreciate or acknowledge their condition can be incredibly frustrating. Caregivers and family members should try their best to remember that their loved one is not being manipulative or deceitful; this lack of awareness of their changing behaviour is a symptom of the disease.
Trying to convince the person with FTD that they have a disease is not going to be helpful. Lack of insight is a symptom of the brain’s deterioration and cannot be treated by argument or persuasion; this usually just leads to frustration, agitation and even, in some cases, aggression.
Lack of insight is one of the main reasons people with FTD refuse medical care. This can be particularly problematic prior to a diagnosis. Consider creative, indirect ways to have your person seen by a healthcare provider if they resist. Consider speaking to your GP to express your concerns and seek their assistance in getting your loved one to attend a medical appointment.
FTD is not a single disease with an orderly sequence of stages. Initially FTD affects one of three broad categories of functioning: (1) behaviour, personality, and executive skills; (2) language and communication; or (3) movement and body control. As the disease progresses, difficulties in other categories of functioning may develop. Each person with FTD experiences these difficulties in a highly variable sequence and at a different pace.
With progression of the disease it becomes increasingly difficult for people to plan or organise activities. They may behave inappropriately in social or work settings. They may find it increasingly difficult to interact with others, and to care for themselves. The person with FTD will become increasingly dependent on caregivers.
Regardless of the initial diagnosis, the differences between the types of FTD blur over time. When FTD reaches its final stages all people with the illness will require total care.
Although research is active and ongoing, there are currently no approved treatments that can stop or slow the progression of FTD. However, there are pharmacological, behavioural, and environmental interventions that can help with the management of symptoms.
The page Treating FTD discusses medications used in treating FTD symptoms.
AFTD’s Partners in FTD Care newsletters describe how practical interventions can help manage certain challenging symptoms.