DEMENTIA CARE Compassion is Key
Jean Wooldridge, who works on Dementia UK’s Admiral Nurse Dementia Helpline, talks us through how we can build up a better understanding of loss in dementia and support families through its impact.
Since 2019, Dementia UK’s Admiral Nurse Dementia Helpline has had a 48% increase in calls relating to bereavement, which includes feelings of grief and loss as well as adjusting to the changes brought on aſter such life events. These calls have been rising year-on-year since the start of the pandemic.
Following the effects of the pandemic, we have all been challenged by feelings of loss; from not being able to see friends and family to, in some instances not being able to say goodbye to someone properly before they die. Loss can bring a whole host of feelings and there is no ‘right’ or ‘wrong’ way to mourn the loss of time, a relationship, or even a life. For people and families affected by dementia, feelings of loss can be complex and unpredictable because that is the very nature of the condition itself. By looking at how grief can manifest in the context of dementia, we can open ourselves up to a more compassionate society and become kinder to ourselves and others.
DISENFRANCHISED GRIEF
Dementia is still a stigmatised condition, typified by many losses even before the loss of the person dying. Some families affected may hear, or even think themselves, that the person diagnosed is losing parts of what has made them who they are, including their memories or independence. When an actual death occurs, their grief can be disenfranchised because a lot of the grief is presumed by themselves, families, and even professionals, to already have happened in their loss to dementia.
Grief in dementia is, however, complex; people should be able to grieve for the loss of memory as much as they can for the loss of life. This can lead to more emotionally fraught behaviour amongst families at not having their grief
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recognised, the implications of which can be felt long aſter the death of the person with dementia.
TUNING IN TO EACH AND EVERY EMOTION The point needs to be made that we can never conclusively say how someone is meant to feel during and aſter dementia; we are all different. If we take the unpaid carer who has been supporting their partner through dementia and has developed a way of life around that, but aſter death they suddenly no longer know what to do, what feelings would we expect them to have? Relief? Loss? Confusion? Frustration? We cannot say, but as a society we need to be ready to be tuned to each and every one of these emotions.
IMPROVING ACCESS TO SUPPORT This is why improving access and awareness of support services to allow people to talk through these feelings and to have them validated is absolutely critical - people need to understand that what they’re going through isn’t unusual. Our Helpline receives a great number of calls from people who are going through the bereavement process, either related to anticipatory grief or the death of someone. Calls of this nature have in fact seen a year- on-year rise since the start of the pandemic.
The nature of the calls we receive around bereavement has changed. Families have experienced less involvement with services and have had trouble accessing support, added to this is the intensity of being unable to say their final goodbye at a funeral, or making the last visit to a family member living in the local care home due to Covid-19 restrictions.
www.tomorrowscare.co.uk
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