Mary’s story

Mum’s symptoms of dementia started to escalate soon after she moved to her new bungalow when she was 90 years old. She was still such an independent person but would forget to have breakfast; my brother would ring her up to remind her. She would lash out physically and verbally. She became very suspicious and wouldn’t want to see me or speak to me.

Diagnosis and care

As a family, we were concerned, and it was actually a relief when Mum was diagnosed with Alzheimer’s in 2013 because we finally had an answer as to why she was behaving as she was.

Mum wanted to remain in her own home so a care package was put in place. We appointed a very good local care agency who were able to provide continuity of carers, which was important for Mum and reassurance for the family. We were so grateful that the care agency was able to provide the care Mum now needed, especially as she suddenly became bed bound after losing her mobility.

Mary and her mum

CHC process

We applied for NHS continuing healthcare (CHC) to fund Mum’s care needs, but we had so many issues. The delays in the CHC process were such a worry, as Mum’s care agency was small, and they needed the funds, and as a family we were determined it was important to maintain the excellent care she was receiving from the agency. This carried on for months and it was such a stressful time for our family as we were so concerned this care would be taken away from Mum.

I think the biggest issue I had with the CHC process was that it was so difficult to find my way around it. No one seemed to be aware of the importance of recording information and there was a real lack of consistency. If you rang up and someone who you hadn’t been talking to before picked up, they wouldn’t really know who they were dealing with. It felt like you were starting from the beginning again.

Simone’s support

It was a snowball effect; from one simple thing, it just escalated into a whole raft of issues. They just didn’t seem to have a grasp of dementia and how it impacted on Mum’s needs. It was a testing time, which I couldn’t have faced without my Admiral Nurse, Simone. There was a lot of advocating on Simone’s behalf, and it did finally get resolved because of her support and knowledge. Simone followed up a lot of things with CHC to ease the pressure on me so I could spend quality time with my Mum.

It is so important for families going through the CHC process to have someone like an Admiral Nurse to help them navigate the system. I don’t know how families cope on their own.

Simone Kelly:CHC is so wide with regard to its criteria. Dementia awareness isn’t really the focus of that. There is a lot to be done with dementia and CHC, not just the fact that it affects memory but also that it can cause intense physical strain. This isn’t just for the person with dementia but for the wider family too.”

We’re campaigning for better care so that everyone affected by dementia gets the specialist support they deserve. All too often people living with dementia and their families are left to cope alone. Together we can create a better system.

Rachael's story

Rachael, who helps care for her grandfather and grandmother, speaks about the difficulties they’ve had applying for CHC

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Guiding the way

Continuing healthcare can be a lifeline for many people with long-term and complex health needs. However, many families affected by dementia struggle to navigate the system – if they are aware of CHC as an option at all. Find out more about our campaign here

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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

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