If you have received a diagnosis of one of the language forms of FTD – specifically semantic dementia (SD) or progressive nonfluent aphasia (PNFA) – then please visit our Living with PPA page.
Support
Receiving a diagnosis of bvFTD can be isolating and can have an impact on family members, friends and carers. It is really important that the right support is available, not only for the person with bvFTD, but also for their loved ones. Our FTD Support Group meetings can be a good place to start.
Support groups are a great way of accessing help, information, advice and support in a space of mutual respect and understanding. They provide opportunities to speak to professionals and ask questions, as well as for connecting with others in similar situations.
People living with FTD and their friends and family are welcome to join our London support group meetings or to see what regional support groups might be available. Please visit our Meetings page for details of upcoming meetings.
If someone has received a diagnosis of bvFTD, they may have problems with movement or coordination. In these cases, support from a neurologist, physiotherapist or occupational therapist can also be accessed.
It is important to note that, as bvFTD is a rare dementia, many healthcare services do not have much experience supporting people with FTD. However, you may still find it helpful to seek support from a variety of health and social care professionals such as GPs and nurses, community mental health teams and social workers.
Strategies for managing bvFTD
There are certain strategies that people have found useful to help them manage the symptoms of bvFTD.
We understand that everyone affected by FTD experiences it differently and what works for some may not work for others. The tools and strategies suggested below have been shared by FTD Support Group members and other relevant organisations.
Behavioural challenges
Many people with bvFTD continue to lead an active social life for some years following diagnosis, but changes in their behaviour can begin to make social situations more challenging. It can be less stressful for carers if they try to accept awkward and potentially embarrassing behavioural symptoms as part of the disease, rather than confront or correct the person, unless the behaviour poses a risk of harm.
The person with dementia will generally lack insight into their condition or the impact of their behaviour on others. They may also be impulsive and not have much control over their actions. When a person with bvFTD behaves inappropriately in public, it can be useful for the carer to try to remove any triggers for this behaviour, or distract the person with something else.
Sometimes modifications to the environment or other practical steps can be made to help deal with behavioural symptoms. Examples include:
- carrying a card to give to other people which explains that the person’s behaviour or judgment is affected by dementia – this can be useful when behaviour is disinhibited or inappropriate in public. The Alzheimer’s Society produce helpcards than you can use for this purpose
- limiting access to credit cards if excessive spending is a problem
- limiting access to food if overeating becomes an issue
- considering whether changes in behaviour has made driving unsafe – see our General Advice page for more information on driving and dementia
Safe eating
FTD can affect a person’s ability to concentrate on their meals, to recognise foods, to feed themselves or to coordinate chewing and swallowing.
If you, or someone close to you, is concerned about their swallowing it is important to seek advice from a speech and language therapist, as the strategies recommended will vary depending on the areas of difficulty. You can also obtain a referral for speech and language therapy through your Consultant, GP or most other medical professionals you may be involved with.
While a speech and language therapist may make specific suggestions about what will help, you may find following the general guidance below useful for mealtimes:
Tips for people living with FTD:
- sit at the dinner table with the table set to establish that it is mealtime
- sitting upright, keeping the chin down
- take small sips of drink and small mouthfuls of food, perhaps from a teaspoon
- alternate food and drink to help clear the mouth of food: this should be discussed with a speech and language therapist
- try to swallow each mouthful twice to clear any food or drink that may remain in the mouth or in the throat after the first swallow
Tips for carers and family:
- create a quiet environment, with few distractions (such as television or radio)
- you may have to sit with the person to remind them to use these strategies, and you may find that mealtimes take much longer
Treatment
bvFTD
Unfortunately, there are no medications available to treat bvFTD or to slow its progression. Treatment therefore focuses on helping people to manage their symptoms and on supporting them and those around them.
However, there are certain cases where people living with bvFTD might find medical treatments helpful. Medication for behavioural symptoms and mood changes may become useful as the disease progresses. There is some evidence that selective serotonin reuptake inhibitors (SSRIs) may help improve behavioural symptoms. For example drugs such as sertraline or citalopram.
Neuroleptic drugs have been used to treat behavioural symptoms but are associated with a significant risk of side-effects including the development of parkinsonism and deterioration in thinking.
In a small number of people, FTD can overlap with one of a number of diseases that affect movement of the body such as motor neurone disease (MND), progressive supranuclear palsy (PSP), and corticobasal syndrome (CBS). In these cases, treatments specific to these conditions may be prescribed.
Understandably, people living with any form of FTD can become depressed or anxious. These are treatable problems, so it is important that they are detected and managed effectively, including referral to a mental health professional where needed.
Please note that you should always speak to your GP or healthcare professional before taking any medical treatment.
