This page aims to guide all those affected by a diagnosis of posterior cortical atrophy (PCA) through the more advanced stages of the condition. This includes carers, families and friends.

Home and residential care

It is important that care home staff are aware of the specific needs of someone living with PCA. However, because it is a rare condition, it can be difficult to find a care home or care staff who are familiar with PCA.

Rare Dementia Support can provide a selection of resources and facilitate in-house training sessions in which a volunteer from our PCA Support Group can attend and share their experiences. The sessions will also include a member of the UCL Dementia Research Centre (joining by video conference) to provide further information about PCA and to address carers’ questions and concerns. We are also developing online resources designed to improve understanding of PCA and other rare dementias. These can be found on our Learning page.

Care home staff may also find our short film useful which details the everyday experiences of people living with PCA and their perception of the world around them. People living with PCA have also found this to be a useful tool in describing their experiences. We have created a short animated film, narrated by people living with PCA and their partners. Watch film ‘Do I see what you see?‘.

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 (such as 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 for the future is beneficial. 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 PCA differs from person to person. Although PCA is itself a life-limiting condition, people with PCA are often affected by another illness such as pneumonia. This is because PCA 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.

The later stages of PCA are particularly under-researched and as a result, poorly understood. We are currently working to expand and develop our guidance on the late stages of PCA 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 PCA might develop are outlined below. These symptoms may not be the same for everybody. If you would like to talk to somebody about how the issues raised here have affected you, please get in touch.

People may lose the ability to respond to their environment, to carry on a conversation and to control movement. There may be discrepancies, for example, they may still be able to say words and phrases or have a continued ability to laugh.

In the advanced stages, people will need help with much of their daily personal care, including eating or using the toilet. They may also lose the ability to smile, to sit without support and to hold their heads up. Maintaining adequate nutrition, hydration and skin integrity can also be challenging at this stage but problems (such as bedsores) are not inevitable.

We have explained more below how the skills and abilities of someone with a diagnosis of PCA might change, but it is important to remember the experience of PCA differs from one person to the next.

In the advanced stages of PCA, a person might:

• be ‘functionally blind’, requiring support in all visually-guided activities
• be inconsistent in their recollection of recent events and plans
• have difficulty communicating and understanding verbal and visual information
• experience changes in sleep patterns (such as sleeping during the day and becoming restless at night)
• have trouble controlling their bladder or bowels
• become more quiet and withdrawn, appearing disengaged from the environment unless addressed directly
• experience behaviour and personality changes, including obsessions, compulsions, suspiciousness and delusions (believing that their caregiver is an imposter, for example)
• experience a further loss of sensory functions (such as a partial or complete loss of response to touch, swallowing issues or seizures)

Our members have shared some of the tips and strategies that they have found useful in helping to manage these symptoms. You can read more about these on our Living with PCA page. You may also find visiting our FAQs section useful.

In general, the beginning of further neurological problems, such as loss of vision or difficulties with memory or swallowing, tends to bring reduced independence and a need for increased support.

Therefore, people affected by PCA, including partners, carers and families, may find coming along to our PCA 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.

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