In this post Dr Kirsten Moore, Marie Curie Palliative Care Research Department, UCL talks about dementia and supporting those living with demenita during the coronavirus pandemic.
Who is dying with Covid-19?
In April this year Covid-19 (coronavirus) became the most common cause of death in the UK. Office for National Statistics data showed that most deaths caused by the virus in England and Wales were among older people and those with underlying health conditions.
One fifth of people dying with coronavirus had dementia, making it the most common pre-existing condition. Also, the death rate from dementia was significantly higher in April than the previous five-year average.
How is COVID-19 impacting family and carers?
In the UK 700,000 family members and friends support someone living with dementia, providing 44% of the cost of care for people living with dementia1. Being a carer can negatively impact finances, stress and physical and emotional health. In our recent publication we highlight some of the end of life care challenges that coronavirus has created for families caring for a frail older person or someone with dementia.
A diagnosis of dementia often leads to reduced social interaction for both the person with dementia and their family carer. Social distancing and lockdown measures are increasing this isolation and loneliness. Carers may have additional worries supporting the person with dementia who may not understand the importance of shielding and keeping socially distant from others.
End of life discussions and planning
When a person with dementia lacks capacity to make decisions, families may be faced with difficult decisions about whether to send their relative with dementia to hospital or a care home for care, or whether to provide end of life care at home where they can be present with their relative. Alternatively, they may have these decisions taken out of their hands due to procedures and guidelines adopted to contain the spread and impact of coronavirus.
In advanced dementia communication may be limited for many months. Having discussions in the early stages of dementia gives someone with the condition an opportunity to express their preferences about end of life care.
There are many benefits to discussing our end of life wishes with our family and those who are important to us. They allow us to share how we want to be cared for and who we want involved in decision making if we can no longer make or communicate decisions.
These discussions can also help family feel more confident in making decisions if the person living with dementia lacks capacity. When family members are unsure what a person wanted at the end of life, they may worry they have made the wrong decisions or feel guilty if the person had an uncomfortable death.
However, these conversations are not easy. Discussing end of life is something most of us tend to avoid. It is difficult to face our own mortality. These conversations are also difficult because we don’t know what is likely to happen or what sort of decisions we, or our families, may be faced with. Often discussions tend to focus on resuscitation status, place of death or whether someone should be taken to hospital.
People who have dementia may find it difficult to imagine situations that they have not yet faced, such as difficulties swallowing and talking.
How can we support carers?
Simply keeping family carers involved and informed is an important way healthcare professionals, hospitals and care homes can support family carers. This may involve having conversations about place of care and end of life care.
There are numerous guides about difficult conversations, such as this Marie Curie blog. There is no one-size-fits-all approach, but the most difficult part is often starting the conversation. Healthcare professionals may be worried about raising end of life topics, that they may not have all the answers or that the family may not want to have these discussions. Carers, however, usually prefer an open and honest conversation, including being told that there may be uncertainty or no clear answers.
Being responsive to whether the carer is ready to have a conversation is important. There may be a pressing need for a conversation, but if discussions are raised at an earlier point in the dementia trajectory then it can give the carer more time to prepare themselves for discussing end of life.
What can carers do?
Family and carers may feel that if a conversation about end of life is needed, it will be raised by healthcare professionals. However, this may not always happen. Carers should feel reassured that if they have questions about the care of their friend or relative, that they should feel able to ask healthcare professionals for information and advice.
You may find it helpful to talk decisions out loud or write down a list of pros and cons. These simple strategies can help you clarify what is important or where you need more information or advice. It is important to get information from reliable and trusted sources. Make use of helplines such as the Marie Curie, Dementia UK or Alzheimer’s Society helplines.
Having a family member who understands how dementia progresses has been linked to a more comfortable death for care home residents. Keep in mind the best interests of the person with dementia if they lack capacity to make their own decisions. Think about their values and what would be important to them. It may not be realistic to follow all their wishes, so do not feel guilty if this cannot be achieved.
Developing a decision aid
To help guide families and carers in making some of the complex and challenging decisions raised here, our team at the Marie Curie Palliative Care Research Department at University College London are developing a decision aid.
We will be exploring the questions that people are asking Marie Curie and the Alzheimer’s Society to work out the biggest challenges facing people with dementia and their families during the pandemic.
We will then work with family carers, healthcare professionals and use existing research to develop a decision aid. The decision aid will help carers think about their current circumstances and provide relevant information to help inform their decision making.
1. Prince, M., Knapp, M., et.al. (2014). Dementia UK Update (2nd edition).
This blog was originally posted on the Marie Curie website, taken with permission from Marie Curie and Kirsten Moore. https://www.mariecurie.org.uk/blog/supporting-carers-dementia/277479