Dying with dementia: the challenge of prognosis

Every three minutes someone develops dementia in the UK¹. It is a life-limiting condition and those living with it will die with or from it, yet access to end-of-life care for families living with dementia remains fraught with challenges.

Dementia progresses differently for each individual and due to the complexity of the condition, it can sometimes be difficult to identify when someone is approaching the end of their life.

Despite dementia being the leading cause of death in the UK, education and understanding of the way it impacts on families is limited². This lack of awareness combined with waiting lists for memory services to obtain a diagnosis reaching up to several months has led to poorer outcomes for people living with the condition when they approach the end of their lives³.

Towards the end of life, some people might experience a rapid decline in their symptoms, whereas others may have a slower progression and have a better quality of life living with dementia for a longer period of time.

When someone is in the last days of life, symptoms can include changes in breathing patterns and skin colour, eating and drinking less or becoming sleepier however each experience is individual. This variable progression in dementia symptoms coupled with the general lack of understanding of the condition particularly that it is life-limiting, can make it challenging to identify where a person is in their journey living with it.

While we know dying can be hard to identify and accept, good end of life care is critical for enhancing quality of life and ensuring the person with dementia’s needs are met, while also easing distress for those around them.

Early diagnosis is critical for ensuring good quality end of life care can be accessed when it’s needed. Getting a prompt diagnosis and identifying dementia in its early stages allows for better treatments and care planning.

Once a diagnosis has been made, it is important to start conversations around future plans to try and ensure that the person’s wishes are kept central to their care. This includes putting an Advance Care Plan (ACP) in place. An ACP is a record of the person’s preferences about their future care and support, including decisions about medical treatment and end of life care. It is one way to start the conversation about end-of-life care and having an opportunity to plan ahead. Whilst an ACP is not a legally binding document, it will help people to understand and respect the persons views and what is important to them.

There are some tools that can also assist healthcare professionals with supporting people with dementia entering the last phase of their life.

Prognostic indicator tools provide useful guidance for healthcare professionals in decision making and conversations around end of life. The Gold Standards Framework developed ‘Proactive Identification Guidance’ which includes dementia alongside other life limiting illnesses⁴.

Another example of a prognostic indicator tool is the Supportive and Palliative Care Indicator Tool e-SPICT – SPICT⁵.

It is important to note, that these tools do not always highlight cognitive decline; when someone doesn’t have capacity to make decisions, their Advance Care Plan and Lasting Power of Attorney arrangements become central. Diagnosing dying is not always about medical facts – for those who are frail and living with dementia, a holistic assessment is vital, alongside the perspective of their family and what they notice is happening.

To ensure people with dementia can die with the dignity and comfort, we need to build greater awareness amongst healthcare professionals and the general public about dementia being a life-limiting illness.

People with dementia and those important to them, must also be central to all decisions made around their end of life care, with good communication all around. We all deserve a good death and to feel that our wishes are being respected as we approach the final days of our lives – we must do better to make sure that people are not dying in pain or discomfort.

Dementia UK, the specialist dementia nursing charity, is committed to ensuring all families with dementia have equitable access to the care they need – offering free specialist support through its national Helpline and network of 400+ Admiral Nurses, as well as campaigning for changes to dementia care and funding.

For more information about recognising the later stages of dementia, visit: https://www.dementiauk.org/information-and-support/looking-after-yourself-as-a-carer/end-of-life-care/

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