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Although it only been a year since my wife was diagnosed with dementia we have felt that we are not important or an urgent case, Social Services keep tell us that they are aware but not forthcoming with any help. it is sad that I no longer seem to be married to my wife of 44 years. each passing day i am just left to cope with the changes, worst of all is I cannot understand what she wants, While it may seem like there is a lot of help out there it can be confusing while the person who need help is classed as able to make their own choices...

As I write this I can’t help but cry my mom is now in a care home as we could not care for her safely at home. What an amazing human being she has four children of her own and fostered around 30 children and babies in her lifetime. We had to fight to get a diagnosis and help. More needs to be done to help with early diagnosis treatment and help for families caring for dementia patients they deserve and have the right to receive the best care.

It took 5 awful years from my dad going to the GP about his memory, until getting a diagnosis of vascular dementia. He was told repeatedly that it was anxiety and depression, not dementia. He couldn't complete the first memory test due to a panic attack, which cemented the view that it was anxiety, not dementia - dad was so down because he was so sure it was different. Referrals were initially lost and then took excruciatingly long to come back. When he finally got the diagnosis (5 years after first going to the GP and his 2nd round of assessments), it took 4 months to get a follow up letter confirming the diagnosis (also sent to his GP) that was so full of jargon and acronyms it was virtually unreadable. Those 5 years not knowing, and fighting to be believed that something was wrong (and that it wasn't anxiety) were so awful, I can't even think about it without crying.

I began to think that I wasn't able to remember my spelling , having always being proud of my good brain ! I saw a Doctor twice and each time I was told there was nothing wrong with my brain ! A year later the doctor told m I had Alzheimer's

I went to a memory clinic from my doctors my antidepressant tablets did not help me and l started forgetting words, the doctor sent me to the memory clinic, and they diagnosed me with early Alzheimer’s.since then the depression has got worse and very bad Anxiety l am very ill."t

We noticed my husband’s short term memory loss during lockdown. He used to love cooking but gradually stopped making meals. Going to wrong cupboards for cups, salt and pepper etc. He was an avid reader but now can’t remember what he has read. Cannot follow tv programmes and become restless with shows other than watching sport on the box. He repeats himself in conversation and cannot hold appointment dates and times. Becoming agitated and clock watching when going out. He was eventually diagnosed with early stage Alzheimer’s on 23 April 2024. But as of 15 May still has not been given any medication to help. Both his hearing and eye sight has deteriorated. The medical profession is slow acting and various departments show a complete lack of communication between each other. He is also registered disabled and has mobility issues. He is 82 swims a mile every morning trying to keep fit as he relies on his upper body strength to be able to walk with the aid of crutches for the past 40 years. Seems when you’re elderly no one cares. As his carer I rely on family for support as there other help is virtually nonexistent.

My mum took a number of years to convince to go to the doctor, she knew, but didn’t want to know and was doing ok. Finally she went to the doctor to support me. She had to have a brain scan and was referred to Memory Services which was a wait of a few months. She was diagnosed with Mild Cognitive Impairment 2019 and went to some memory workshops with her husband. The Memory Services then closed her case.
During Covid mum deteriorated quickly and so we tried to get her re-diagnosed, she had to wait a year to be seen by memory services and was diagnosed with Alzheimer’s in the end of 2021. At this point her mobility had deteriorated and medication wasn’t advised as it would make her more unstable and likely to have falls. Mum died in March 2022, not from Alzheimer’s.
I’d like to see better diagnosis (I know it’s not an exact science so isn’t straightforward). I’d also like to see dementia nurses, like I have a Diabetes Nurse, with at least annual check-ups and tests and a central-point/person for all referrals and support that you might need. We spent time and heartache filling in forms for different agencies, being on waiting lists to try and get items to support and carers to support. Every agency has waiting lists, does their bit, then closes the case. Dementia is degenerative so you need a service that’s there for the long run. I wish I’d contacted Alzheimer’s Society at the start as they are the only agency that would keep checking in and seemed to understand.
My mum was a beautiful woman with a warm heart and a wonderful smile and I’m so lucky she was my mum and I’ll always miss her.

Diagnosed 3 years ago, Mementine prescribed not heard a thing since, living to die I guess? Is there any hope of any medical breakthrough?