Since 2019, Dementia UK has experienced a 48% increase in calls from people who are experiencing feelings of loss. Calls of this nature have seen a year-on-year rise since the start of the pandemic. With Christmas and the new year fast approaching, people often find this a time for reflection and may be thinking about those they have lost.
Our Admiral Nurses are there when people need help. They have the time to listen and the knowledge to solve problems, and are a lifeline for families facing dementia. Jean Wooldridge, who works on the Admiral Nurse Helpline has outlined some suggestions around how people can manage feelings of loss. These feelings can be triggered after a death or a diagnosis of dementia – the latter can result in changes in personality and abilities which can intensify feelings of loss for the person diagnosed, and those supporting and caring for them.
Acknowledge that everyone responds to grief differently
Look within yourself and ask yourself how you are feeling, not what you should be feeling. Acknowledging the range of emotions that you’re going through can be helpful; this can be anger, loss, sorrow, fear, or even denial – which are all heavily associated with bereavement.
These may come over you in waves and at unexpected times, causing physical reactions such as crying and palpitations. You may find this happens during normal daily activities, such as someone cutting in front of you in a queue. You may unexpectedly become upset and start to cry, or shout. However, if you are aware of your emotions, you know your reaction is actually part of your grief response, helping you to feel more in control.
Be kind to yourself
Try keeping a grief diary to write down your feelings and thoughts, and also to note the progress you are making day by day. Try to get outside in nature, if you can, to help you feel more connected to the present. Find Mindfulness activities that you like on the internet or on apps, which include natural sounds and images if you can’t find time to go outside.
Take things one day at a time and forgive yourself if things don’t go to plan. Tell yourself it’s ok not to feel up to much on a particular day. Do whatever makes you feel cared for, such as ordering a takeaway meal so you don’t have to cook, taking a warm bath for yourself, making a phone call to a friend or a helpline, or having a cuddle with a pet.
Identify sources of support
Having a conversation with a dementia specialist nurse who understands what you are going through and has knowledge of different services can allow people to face their situation more comfortably.
Talking to an outside compassionate voice can empower people to have that conversation around support needs; these conversations can take place between GPs or other healthcare professionals, which can then lead to signposting to bereavement counselling or support services like CRUSE.
Open up conversations around death and dying with friends and family
Whether as a professional supporting a person with dementia or their family member, you can start having gentle conversations with someone and introduce ideas around their future. You could talk about how things might look next week, or even next week, before finally moving on to how care and support looks at end of life – resources around Advance Care Planning may help. Having these conversations early can support decision making for families, especially if faced with a crisis situation, such as Covid-19.
If someone close has died, make people with dementia a part of the grieving process, whenever possible
Try and be honest with people with dementia when you can. The person with dementia has as much right to grieve as anyone else. Talking to them about it, allowing them to know what’s happened, and giving them time to ask questions can help them feel supported during what can be a challenging process. If appropriate, you could involve the person with dementia in any funeral arrangements if someone close to them has died.
However there may be instances when the dementia is so advanced, or the person is struggling to retain or process the information, which can make grieving for someone the person with dementia has known more challenging – be aware of any changes in behaviour that could signify this such as anxiety or distress. In these cases, it is ok to stop telling the person the bad news.
Former carer Emma Scattergood, whose mother was diagnosed with mixed dementia (vascular dementia and Alzheimer’s) said: “One of the things I found hard was how some people assumed that my grief when my mother died would be reduced because I’d ‘already lost her’ to dementia. It’s true that I’d already suffered multiple feelings of loss as my mother deteriorated, but that didn’t make the ultimate sense of loss or the grieving process any easier.
“I also remember telling a friend that I didn’t know what ‘the point of me’ was anymore, now that I wasn’t a carer.”
“I don’t think we appreciate the process of grief or talk about it enough. After accessing emotional support, I could understand that what I was going through was normal, and essentially be given permission to look after myself a bit better. I did little things to nurture myself, such as yoga. I discovered writing a journal helped me process everything that happened, and soon found I was on a much more even keel.”
“I’ll be thinking about mum this Christmas – and Remembering a Star in her memory. I’m so grateful to have had the support of an Admiral Nurse but I realise not all of us are so fortunate and there needs to be more of them. It’s why I’m supporting Dementia UK and why I’m asking you to join me too and Remember a Star.”
This year we have relaunched ourRemember a Star campaign. You can remember, celebrate or thank someone affected by dementia, more details are below.
How we can support you
Whether you have a question that needs an immediate answer or need emotional support when life feels overwhelming, these are the ways our dementia specialist Admiral Nurses can support you
Remember, thank or celebrate a loved one this Christmas by creating a personalised star. In doing so, you’ll be making it possible for more families to receive the specialist dementia support of our Admiral Nurses