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Advance care planning through the COVID lens

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Dementia is now the commonest cause of death in the UK, with an expected 220,000 annual deaths expected by 2040 either with or from dementia.  There is no effective treatment or cure for dementia but, despite this, many clinicians involved in its diagnostic process may not acknowledge dementia as life-limiting or in the context of it as a terminal illness with families affected.  This may leave families unaware of the terminal nature of the disease and avail themselves of discussions and plans required in planning ahead. Similarly, less attention has been paid to conversations about what a person with dementia and their family might experience in the later stages of dementia and at end of life. Advance care planning is an intervention available for all of us to focus our minds on what kind of care and treatment we would wish for, at a time when we do not have the ability to make such decisions for ourselves. These decisions may include for example, discussions about care home placement, and do not attempt cardiopulmonary resuscitation orders. Making decisions for future health care following a diagnosis of dementia, or any other life-limiting illness, is not an easy thing to do.  Advance care planning discussions in dementia centre on hypothetical scenarios and outline options for care and treatment based upon these. Most people are familiar with a scenario of one’s heart stopping and what actions can be taken to get it going again – cardio-pulmonary resuscitation (CPR).  Indeed, viewers of heath soap-operas, such as ‘Casualty’, may see several incidents where CPR is performed!  When someone has a diagnosis of dementia an advance care planning discussion seeks to help them consider their wishes and preferences across a range of events; CPR being just one.  Now there is an imperative to include wishes and preferences for decisions should a person with dementia contract COVID-19.

The COVID-19 pandemic is still an all-consuming topic on everyone's mind and though we know much more about the virus and its effects since first recorded it still casts a deal of uncertainty when thinking about the future. The pandemic has prompted a lot of activity in health and social care to speedily develop advance care plans in older people and people with dementia; populations seen as the most vulnerable in contracting the virus. Fortunately we have moved on from the situation in the early months of COVID-19 where rationing access of older, vulnerable populations to ventilation was proposed (https://idea.nottingham.ac.uk/blogs/posts/fair-weather-rhetoric ) and NHS resources seeming to cope well and not being severely compromised as was first feared.  COVID-19 can, and has, infected people with dementia who are otherwise fit and well but having dementia does not mean their life has no worth or that they should join the back of the queue for active interventions for COVID-19. Advance care planning and conversations about end of life care should be tailored to reflect the wishes and preferences of any individual, irrespective of diagnosis, age, gender, race, etc. Advance care planning should involve an equitable process that seeks to provide knowledge, guidance and support to enable all to consider their future health and social care preferences and make their decisions known to guide those around them to respond to any situation that arises.  Advance care planning is an intervention designed to manage decision making in the exact type of situations that the virus has presented. The virus has been rather a wake-up call for dementia care; whether that be in primary care, acute hospitals or care homes and a realisation that having an advance care plan in place can promote and enact care decisions that person-centred. No one could have predicted the COVID-19 crisis and research; time and reflection will inform us as to how well we did in managing it.  An important reflection to have is what priority advance care planning will now be given at the point of a diagnosis of dementia. Learning through a COVID-19 lens advance care planning should be seen as a priority and have dedicated clinical time to facilitate the process.


Dr Karen Harrison Dening

Head of Research & Publications, Dementia UK


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