The fight for a dementia diagnosis: John’s story

The following account describes the experiences of a carer and their journey to getting a diagnosis of dementia for their husband.

I noticed the initial symptoms started when John became stressed over simple daily things. He had increased confusion over daily tasks, concerns over going on UK holidays and driving.

When I initially took John to the GP, they prescribed antidepressants due to anxiety, having no motivation and a lack of confidence. John then fell in the night, so I called 999 as he had a severe cut and was bleeding. John then had another fall, and I knew his diagnosis of anxiety was incorrect, so I went back to the GP to investigate further.

After waiting for eight months, we had the first meeting with the rapid intervention team to look at his symptoms and decide next steps. Around this time, John also had an appointment at the memory clinic where the Consultant requested a referral for further memory assessments.

Seven months later the consultant specialist diagnosed John with early Lewy Body Dementia with associated Parkinsons. Immediately after the diagnosis, we had the opportunity to talk briefly with Age concern, Alzheimer’s Society and local council representatives. This was very overwhelming as I was still in shock.

There was no advice provided at any stage regarding next steps. I had to find support myself, I wasn’t signposted to any support. The telephone call from Social Services was within 4 weeks of diagnosis which I felt was far too early as I had no idea yet of his needs. I was then removed off their records. I contacted the Alzheimer’s Society which was helpful and I was advised about support through group meetings. We also had a speech therapy review, but John got discharged as they said there was little they could do to help.

Around four months later I noticed John was deteriorating. There was more frequent memory losses, confusion and difficulty with balance and walking pace at times. He had another fall, was often breaking down because he was so upset and had increased difficulties with simple tasks.

I contacted the Dementia Alzheimer’s team for support and coping strategies for myself and got put on the waiting list for Crisp training. I also contacted the Council and N-Compass again for carers support as I felt abandoned and stressed with the situation.

Another two months later I had a telephone call assessment with N-Compass. They were very helpful and offered me advice and signposting to support options. They said they would call me back in March and then on an annual basis. No follow up call happened. John’s symptoms progressed and I was struggling to manage his symptoms.

I called the GP for an appointment to discuss John’s dementia and I mentioned the lack of support we have received since his diagnosis. The GP referred us back to the memory clinic. Around a similar time, we attended a self-referral anxiety workshop event and Dementia talk at Heartbeat and Uclan. I found this workshop myself as I wasn’t getting any support from anywhere else. 

Finally, I received a call from the Specialist Doctor who called for 40 minutes to discuss the situation; they advised that John was referred to neurology for his Parkinson’s symptoms, but his referral was still pending. I went back to the GP, and he considered a referral to the falls clinic as John was suffering with a lot of falls still.  I came across the Blue Flamingo Dementia café and attended a carers session which was helpful.

In the 10 months since diagnosis, John’s dementia has progressed further than expected. There has been a lack of support from his GP and the memory clinic to help understand this progression. It’s unclear if his medication is helping to slow his dementia. Any help we have received has been self-initiated and I have found advice and support from the internet. We haven’t received any support from the GP or memory clinic which is disappointing.

John’s wife believes the following actions would have helped with her situation:

• A follow up call by the memory clinic 2 weeks after diagnosis to touch base with families and carers as well as a 6-month review to check any progression symptoms.
• An initial GP appointment after diagnosis to help manage with progression of symptoms and to help understand the next steps.
• Social Services need a better understanding of dementia, including stages and types. They need to assess when to contact carers more appropriately as 3-6 months after diagnosis may be better. An annual review would also be helpful.

This case study is anonymous, and names have been changed to protect confidentiality.

We have sent this case study to Lancashire County Council’s (LCC) Adult Services department who have informed us that this story will help to inform their new Dementia Strategy. It has also been received by LCC’s Quality department and their Carers service.