Taking on a caring role for someone living with dementia can also mean a change in relationship as their condition deteriorates. Adequate information and support for loved ones can relieve the emotional pressure that comes with the role.
As people living with dementia in care settings and at home were left behind during the coronavirus pandemic, their carers – often loved ones dedicating their lives to the role – had the same fate. An under-recognised group of frontline workers, dementia carers have been alone with little support.
“Many carers have been isolated from their support networks, which includes family, friends, respite, and day services; these networks are crucial to give carers a break,” stresses Caroline Scates, Admiral Nurse and head of professional and practice development at Dementia UK.
Having to bear witness to the steep decline that many people living with dementia experienced during this crisis, with no respite to process this, has affected carers’ mental health.
Without greater provision for this group, it will be hard to overcome the anguish experienced from the pandemic.
Although carers for loved ones living with dementia have not been prioritised for support, many people that fall into this category wouldn’t label themselves in this way.
Mary was a carer for her father who had dementia, she says: “I didn’t know that I had sort of inadvertently become a carer overnight. Then we went to the doctors, I went in as his daughter, minutes later I was his carer with absolutely no instructions.”
Mary felt like she had been left alone, with her father’s condition deteriorating quickly. Her experience of feeling shocked at her sudden change of relationship to her father isn’t unique, it is something many carers feel after their loved one receives a diagnosis like dementia.
Dr Michael Staunton, who cares for his wife Avril, doesn’t see himself as a carer and feels there should be more empathy in this process, he explains: “I see the word all the time and I don’t think people realise unless they’ve been on this journey, they don’t have a right to change someone’s status.”
These feelings are what encouraged Michael, Mary and other loved ones to create Care as You Are, a booklet and film taking people through the emotional journey after a loved one receives a dementia diagnosis.
“Nothing prepares you for that and that’s where the notion for the film came in, you realise that you have to do something,” emphasises Mary. “We had to say let’s review this and see how we can turn this into something that can be done positively.”
Broken down into different scenes, Care as You Are is intended to aid loved ones in the road after diagnosis, a time when it is easy to feel confused.
“Everyone talks about the journey, but this is a different sort of experience. In most journeys, you know you’re going to end up somewhere nice or a place you wanted to get to. With dementia, you get somewhere that you didn’t want to and thats very different,” admits Michael.
The film seeks to support carers and encourage them, alongside their friends and family, to navigate this new role while looking after their own emotional wellbeing.
The process of creating the film brought Mary to the realisation that she has felt isolated as a carer, and has had to learn how to regulate different types of experiences, making a choice in how she allows feelings around them to manifest.
A sense of collaboration or companionship with those around you, and the person you are caring for, can make it easier to process the new feelings that come with the caring role.
“When a member of your community or family gets dementia, it is the family that is impacted and the shared experience of that is fundamental,” expresses Mary. “Until I found myself alone, sometimes longer than expected, I didn’t really realise what social beings we are, a relationship with other people to talk about what youre going through can change it.”
A sense of connectivity through speaking to other people can be reassuring and is often considered a form of respite.
“Reading the descriptions of how people with dementia have suffered during this, the carers have been affected in the same way,” reveals Mary. “It’s really important even to hear the sound of a voice, my father ended up bed bound, but him being downstairs meant that everything that took place in the house became a shared experience, all the sounds of social life were able to comfort him and it supported me.”
Michael, who always tries to find the positive in difficult situations, previously dedicated any of his spare time to organising treks for him and Avril abroad, something they would both enoy.
“With organising our treks it’s not just for us, it’s with groups of people and the’ve all got to know us very well, so they’ve been a great support even during the pandemic,” shares Michael.
Although reassurance can come in the form of chats with friends, or a daily jaunt with the dogs, formal support for dementia carers is imperative.
“Care is based on giving, respect and relationships, all of those values should be enhanced by having a network that is immediately available,” states Mary.
“I think it’s essential to the health of the carer, there’s millions of people caring for someone at home right now and there has to be help, they have to be respected for the work that they’re doing.”
Organisations like Dementia UK are also demanding more, Caroline says: “Social care is in desperate need of a total reform. In the UK, we have a disconnected system with varying layers of bureaucracy to work through, leaving countless families living with dementia without the support they need.
“Services are often inadequate, or simply not available, leaving families at crisis point.”
Until the social care system adequately supports all carers, those supporting people living with dementia will be unable to recover from the trauma of the coronavirus pandemic or move forward.
The Dementia UK Admiral Nurse helpline is available seven days a week over the phone and via email:
0800 888 6678