Much of this advice will also apply to those living with the language forms of frontotemporal dementia (FTD), specifically semantic dementia (SD) and progressive nonfluent aphasia (PNFA). However you will find more tailored information for these forms of FTD on our Primary progressive aphasia (PPA) page.
Home and residential care
It is important that care home staff are aware of the specific needs of someone living with FTD. However, because it is so rare it is difficult to find a care home or care staff who are familiar with FTD.
To address this, Rare Dementia Support are developing and collecting resources designed to improve understanding of FTD – including the inherited forms of FTD – among the public and professionals. These can be found on our Learning page.
Care home staff may also find our short film useful, which features the experiences and challenges of those living with FTD, as well as clinical explanations and insights. People affected by FTD have also found this to be a useful tool in describing their experiences. Watch the film here.
Some people may also find the Care Quality Commission care home finder tool useful. Here you can search for care homes in England based on your geographical area and see independent reviews of the quality of care. You can filter by age (for example, under 65) and condition so you are are more likely to find somewhere suitable to your needs.
For those living in other parts of the UK, the following sites can provide similar services:
Wales: Care Inspectorate Wales
Scotland: Care Inspectorate
Northern Ireland: Regulation and Quality Improvement Authority
Towards end of life care
When a person with dementia is approaching the advanced stages of their condition. it can be a very difficult time for them and their loved ones. Although it’s hard, talking with friends and loved ones and planning ahead can help ensure that a person’s needs, and the needs of those around them, are met at the end of their life. Ideally, this should be done as early as possible in the illness when someone is best able to decide for themselves what they would want. For more information about this topic, including advanced care planning, palliative care and support for carers, you may find the Alzheimer’s Society website useful.
The duration of the behavioural form of FTD differs from person to person. Although bvFTD itself is a life-shortening condition, people with FTD are often affected by another illness, such as pneumonia. This is because FTD affects how the body copes with infection and with other physical problems. Pneumonia is the cause of death in up to two thirds of people with a dementia.
We are currently working to expand and develop our guidance on the late stages of FTD to make it more informative. If you would be interested in contributing your experience and expertise to this work please get in touch. The experiences of support group members and families are very valuable to researchers in helping to advise people in the future.
Support with later stage symptoms
Some of the symptoms that people living with different forms of FTD might develop are outlined below. These symptoms will not apply to everybody. If you would like to talk to somebody about how the issues raised here have affected you, please get in touch.
People with bvFTD may find that behavioural and personality problems progress over time. Other aspects of their thinking may also become affected such as: finding the right word, understanding speech, and memory. However some behaviours such as disinhibition may become less of a problem. The speed of these changes can differ largely between individuals.
As the disease progresses, people will need help with most aspects of daily life. Continence may become a problem and eventually nursing care may become necessary.
In the later stages of bvFTD people may experience issues around eating and swallowing, for example compulsively putting objects in their mouths. Difficulties with swallowing can have serious consequences: people may be at risk of losing weight, of chest infections and pneumonia or of choking on food.
Common problems around eating and swallowing that you may notice:
- being unaware of food when it arrives
- failing to do anything with food in the mouth, just holding it there
- difficulty chewing and difficulty moving food to the back of the mouth
- spitting lumps of food out
- eating very fast or putting too much into the mouth
- eating insufficient amounts or refusing food and drink
- talking with food or drink in the mouth and forgetting to swallow causing coughing
- coughing or choking on food and liquids
- complaints of food not going down or getting stuck in their throat
- a ‘wet’ or ‘gurgly’ voice after swallowing
- difficulty swallowing tablets
- dribbling
- chronic chestiness or recurring chest infections
A speech and language therapist may make specific suggestions about what will help so, if you are concerned about swallowing, it is important to see a speech and language therapist. You can obtain a referral through your Consultant, GP or most other medical professionals you may be involved with. Visit our Living with FTD page for more information on safe eating strategies.
In general, the beginning of other neurological problems – such as difficulties with movement or swallowing – tends to bring reduced independence and a need for increased support.
Therefore people affected by bvFTD, particularly carers, may find coming along to our FTD Support Group meetings helpful. There you can speak to others who are in similar situations, as well as address your questions and concerns with a wide range of professionals in a space of mutual respect and understanding. We also run a separate group for bereaved carers. Find out more about upcoming meetings on our Meetings page.
If you would like to talk to somebody about how the issues raised here have affected you, please get in touch.
