This page covers the three most common forms of PPA – progressive nonfluent aphasia (PNFA), semantic dementia (SD) and logopenic aphasia (LPA).
Home and residential care
It is important that care home staff are aware of the specific needs of someone living with PPA. However, because it is so rare it is difficult to find a care home or care staff who are familiar with PPA.
To address this, Rare Dementia Support are developing and collecting resources designed to improve understanding of PPA and other rare dementias 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 people living with different forms of PPA discussing their everyday experiences and challenges, as well as clinical explanations and insights. People affected by PPA 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 helpful.
The duration of PPA differs from person to person. Although PPA itself is a life-shortening condition, people with PPA will often be affected by another illness, such as pneumonia. This is because PPA 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.
Research studies are working to understand this by following individuals as their condition progresses. We are currently working to expand and develop our guidance on the late stages of PPA 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 PPA 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.
As PPA progresses, people can develop problems that go beyond language, such as with memory, behaviour, thinking, and movement.
Progressive nonfluent aphasia (PNFA)
- increasing difficulty understanding language
- decline in organisational skills and memory
- difficulty using tools and gadgets
- difficulty with swallowing
- symptoms similar to Parkinson’s disease such as slowing or clumsiness of movements, falls, shuffling or freezing when walking and/or tremor
Semantic dementia (SD)
- increasing difficulty recognising familiar people or everyday items, by sight or by sound
- changes in personality, such as becoming more concerned about time and routines, more obsessional or less restrained in public
- inability to recognise or react appropriately to other people’s emotions
- changes in appetite (such as developing a ‘sweet tooth’) or a decline in table manners
- intense development of new interests, for example in music or puzzles
- changes in sensitivity to pain, temperature and bodily sensations
- changes in hearing
Logopenic aphasia (LPA)
- reduced speech and increased hesitation due to problems finding words – and sometimes, use of made-up words or jargon
- increased difficulties with reading, spelling and arithmetic
- emergence of more problems with memory
- increased difficulty with mobility and reduced spatial awareness
- increased difficulty using tools and gadgets
- increased irritability and anxiety, resulting in social withdrawal
All forms of PPA
Later in the course of PPA, the disease will affect many different parts of the brain beyond the language system. This is true for all the major PPA syndromes and means that similar problems can occur in each subtype, including:
- heavily reduced or unintelligible speech
- difficulty understanding other people (both with spoken and written information)
- increased difficulty making complex decisions (around finances and money, for example)
- difficulty with judgment, planning and concentration, affecting activities such as driving
- needing assistance with more basic activities like washing, dressing and eating
- moving slowly and stiffly, becoming less mobile and developing poor balance
- problems with swallowing, diet and nutrition
- problems with continence and use of the toilet
- changes in behaviour, including loss of social awareness, loss of motivation, agitation and sometimes aggression
A speech and language therapist can help manage some of these symptoms and we have provided information on this on our Living with PPA page. Some of these symptoms are also associated with frontotemporal dementia (FTD) and we have detailed some strategies that can help you with these symptoms on our Living with FTD page. This includes strategies for safe eating and managing behavioural changes.
You may also find visiting our FAQs section useful.
People affected by all forms of PPA may find coming along to our PPA 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 separate groups for carers and 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.
