A diagnosis of Alzheimer’s can be challenging for any family, but the lack of support afterwards and the stigma from others can heighten these challenges.
This World Alzheimer’s Day, we spoke to Karen about the support that she feels was lacking after her mum’s diagnosis of mixed dementia (Alzheimer’s and vascular dementia) and the lifeline that she was offered by her Admiral Nurse, Marie, pre-and post-lockdown.
Growing up with mum Christine
Christine was a gentle and hard-working woman, who had been a stay-at-home mum to her two daughters. Karen recalled how mild mannered her mum had always been, enjoying baking and helping the girls with their homework. But the dynamics of their relationship began to change and became more strained as time went on – as the dementia began to progress. “There were quite a few instances where mum was quite argumentative towards me,” Karen recalled.
Karen (pictured second from left with her family)
When Karen pointed out to Christine that they had had this conversation several times already, Christine would disagree with her and become upset. “She was clearly frustrated at the fact that she couldn’t remember conversations,” Karen said. These were the first signs that something wasn’t right, but it never occurred to Karen that her mum might have dementia, until much later on.
Diagnosis of mixed dementia
It was the wider family who kickstarted the route to a diagnosis for her mum, particularly after her uncle was concerned about her driving and the conversations he was having with Christine. This can be quite common for other family members to identify changes if they haven’t seen a relative in a while.
It was a lengthy process for Karen and her mum at the Memory Clinic. Test after test after test eventually led to a dual diagnosis of Alzheimer’s and vascular dementia. A mixed dementia diagnosis is often given when there are changes occurring in the brain at the same time from more than one cause of dementia. A diagnosis of mixed dementia is the most commonly received dementia diagnosis. Despite this, there was no support offered. “We had no idea how it would develop,” Karen said.
After her diagnosis, Christine’s symptoms began to appear more pronounced – such as forgetting Karen’s birthday. Whilst upsetting for Karen, the diagnosis also meant her mum had to give up driving. This loss of independence and the fact that her dad, David, now had to take on roles that Christine had previously held meant that additional support was crucial.
Admiral Nurse, Marie
That support came from Admiral Nurses after Karen and her dad participated in a support course for carers. It was there they met their Admiral Nurse, Marie. “Marie is so personable and my dad developed such a great relationship with her and the family,” Karen recalls. For once, they felt that someone was there for them to help them navigate through a condition which leaves many families in the dark.
Supported throughout the coronavirus pandemic
However, soon after that, the coronavirus pandemic began, which compounded the challenges Karen and her family faced. With changing government guidelines and reduced support groups, families with dementia found themselves caught in a web of confusion and isolation. “My mum just wouldn’t understand social distancing and there were a few instances when people would just not be understanding of my mum when she approached close to them,” Karen says.
For her father, it proved too much to bear. At one point, Karen’s mum basically forgot who her dad was, and even asked whether he had died. Marie helped the family understand why a phenomenon called sundowning could lead to symptoms and distress increasing. Of this, Marie says: “I would advise them to leave the room and then walk back in, or have family members over at the time that it occurs most frequently – this is mainly to support the family carer and also to act as a positive distraction when the person with dementia is at their most anxious and vulnerable.”
Having Marie just a phone call away proved pivotal when her mum went missing from residential care, after being there for just two hours. Trying to arrange care for Christine had seemed bureaucratic and difficult before the pandemic, but now, it was starting to seem insurmountable. However Marie’s proactivity and ability to get things moving quickly for the family was a buffer: “We knew at that point that Marie was at the centre of all of these different systems,” Karen beams. “She would be able to point you in the right direction and recommend things that you would be able to do, such as contacting other residential homes and identifying which of them would be suitable.”
Lockdown had meant all of Christine’s usual support networks, exercise classes and respite options had closed down. Her dad was struggling to cope. Residential care was the best option for all of them. ”We feel incredibly lucky to now have mum in a care home which looks after her. If my mum wasn’t in care, I think my dad would have gone into hospital,” Karen acknowledges.
Dementia UK has been supporting families like Karen’s throughout the pandemic. With high levels of carer stress and deterioration of the person with dementia, the charity’s Admiral Nurses are uniquely placed to improve understanding of the needs, rights and wishes of people affected by the condition at this time.
As Marie says: ”Admiral Nurses support carers at a time when they express that there is no light at the end of the tunnel. Through our expertise, understanding and knowledge of the local services, we are there to help the person living with dementia to continue to life a fulfilling life in their own home. At times, we are there to provide much needed emotional support when families feel that they need to look at alternative care options. The role is rewarding beyond belief by offering families light and using that light to highlight the stigma which many families with dementia go through.”
Karen recently fundraised for us in this summer’s 24/7 Challenge. If you would like to do your own fundraising for Dementia UK, please visit our fundraising page.
Coronavirus information and advice
Read about how you can look after yourself, and the person with dementia, during this time