My nan with dementia deserved better care towards the end of her life

After the passing of her nan, Eileen, Mandy reflects on the lack of professional support her family received following Eileen's diagnosis. Mandy explains why her experiences have made her more determined to raise awareness of dementia, and why she's taking part in Memory Walk.

Before my nan was diagnosed with dementia, she had three strokes. The third one was a bad one and meant she spent most of her time indoors as she couldn’t walk properly.

Following the death of Nan's partner Peter from a heart attack last year, she had carers coming in to help her around the house and to assist with things such as cooking.

I was very close with my nan - she was the best Nan anyone could have.

She was a good listener, always there for people, and loved to laugh. Despite some issues with mobility, Nan didn’t really have any major problems with her memory and would talk about current affairs with ease.

She would occasionally forget my mam or aunty's names and sometimes struggled with speech, but we just put this down to old age or as side effects from the stroke rather than anything more serious.

Eileen and her boyfriend Peter on holiday

Eileen on holiday with her partner Peter

UTI and going into hospital

In February 2022, Nan started showing some signs of having a urinary tract infection (UTI), mainly because she was going to the toilet all the time.

Nan's carer had called an ambulance as Nan was feeling unwell and started to become a little bit breathless. She was then admitted to a local hospital because of the UTI.

We visited Nan at her house the day before she went into hospital, and she was talking fine and walking around as normal.

Two days later when we went to visit Nan again, she couldn’t talk properly, she couldn’t sit up unaided, and she was very confused about everything.

Nan was speaking about things that didn’t make sense and had asked me to help her escape from hospital. It sounded like she had delirium. She had also lost a lot of weight in just a few days - all fat disappearing into skin and bone as she became unable to feed herself.

She looked physically very different and the change in how she was acting was massive in just a couple of days.

Getting Nan's dementia diagnosis

At the hospital they did a head scan, which showed some parts of her brain were more damaged than normal. She was then referred to a psychiatrist to have memory tests.

During these tests Nan wasn’t able to say how old she was, when the war ended, who was Prime Minister etc.

Before going into hospital with a UTI she would have been able to answer these questions pretty easily as we always talked about current affairs. But after just a few days she couldn't.  

It was at this moment that the doctor informed us that my nan had dementia and that she only had between six and 12 months left to live. 

Before the UTI, Nan didn't have any obvious symptoms of dementia. She was occasionally forgetful but this was common for her, even when she was in her forties. 

Eileen and grandson Liam

Eileen and her grandson Liam

Lack of professional support

When Nan was first diagnosed with dementia, I was left feeling frustrated at the lack of information and guidance given to us by the doctor and other healthcare professionals at the time. 

The hospital didn’t tell us anything. They just told us that she had dementia and that she only had less than a year to live, but they didn’t explain what dementia was or really what would happen next.

The way Nan's last couple of months were handled was really difficult to witness. 

Nan was meant to be assessed face-to-face within four weeks to decide whether she should go into a care home or back to her own home but with extra care. But this assessment took four months and was actually done over the phone.

Nan deserved better care

While waiting to be assessed, Nan was put in a temporary care home a couple of hours away from her family and the hospital she was originally admitted to. This meant we could barely visit her.

During her time at the care home, she had two chest infections and caught Covid. She also wasn’t able to stretch her legs like she was meant to.

They just weren’t providing Nan with the proper care that she needed and deserved.  

Nan was passed between different social workers, and they didn’t seem to care much when we spoke to them.

The last time she was admitted to hospital, close to the care home and miles away from us, we got a call telling us Nan was seriously ill and probably wouldn’t make it through the night.

Halfway there we got another call saying she had passed away. Nan ended up dying alone without family near her, just four months after she was diagnosed with dementia.

Our dementia advisers are here for you.

If I could go back in time, Nan would have been better if she had gone to a hospice rather than to a care home miles away, as there was no chance she was going to go home.

The care home didn’t treat her right.

Finding support online

I had to find my own support and advice as it wasn't given to our family by any of the healthcare professionals we had spoken to throughout the experience. While searching online, I came across the Alzheimer’s Society website.

I was able to get the information I couldn’t get elsewhere, such as how to cope when a relative has been placed on end-of-life care or how to deal with grief. I learned how to communicate with someone living with dementia and deal with difficult moments. 

From my experience, doctors need to explain things better and signpost people to support.

The impact dementia has on everyone is huge and handling both the emotional and practical elements can be really difficult. My experience of Alzheimer’s Society has been the best.

Without it we wouldn’t have had the help and support we needed, and we wouldn’t have been able to cope with the loss. 

Why I'm taking part in Memory Walk

I’m doing the Memory Walk in London as it’s a good way to honour my nan's life and to help other people who’re going through a similar situation.

I want to raise awareness of dementia and let other people who know are affected or grieving that they are not alone.  

More information and advice needs to be given to families when they are told their loved one has dementia. I'm hoping that sharing my story and taking part in Memory Walk will help to raise awareness on this issue.

Join Mandy at Memory Walk

Sign up to one of 25 walks this Autumn, and walk to give everyone affected by dementia the support they deserve. 

Find a Memory Walk near you


Hello, I’m so sorry for all of you who are losing loved ones to the soul destroying illness. My husband was diagnosed with Lewy body Dementia and Parkinson’s two years ago. Four years ago he was my carer as I have stage four Breast Cancer. So now I am his carer and dealing with my therapy every three weeks. I did place him in a daycare centre for a few hours a day so I could mange to catch up with things while he was away for those hours. Many times I pick him up at different times during the day and found they had neglected him. He is totally incontinent and many times I found him soaked in urine etc. They just had them sitting in front of the tv all day and he did physio which I payed for extra. Where I live they have very good carers at these homes. They are usually people from abroad who can’t speak Greek or English to the patients and just shout at them. Anyway less than a month ago he got a bad chest infection so I kept him home. And haven’t returned there again. So now I’m dealing with him 24/7. It’s so heart breaking as I feel that I’m going to lose him twice once to the illness and then death eventually. I’ve learnt so much from this website and I’m so grateful. No help is forthcoming from the government here and it’s a huge struggle everyday. I play all of his favourite music and sing to him while bathing, feeding and changing him. He’s the love of my life and it’s tragic to watch this happening. Even the meds they dish out don’t really help. He just locked in his world now and I can’t enter it anymore. I send you all strength and love. Cherish these moments you have with them. Warm regards Alwin.
The best place for elderly parents/ grandparents is to live within a caring family environment. My life is on hold because my father is 93 and has dementia or late stage Alzheimer’s he is happy I make him smile everyday. People with dementia deteriorate quickly in a care home. My father went in a care home for respite he was there 7 days while I was at work. . He came home with a bed sore and bad posture due to being sat in a chair too long. He was bent over for weeks after, thankfully he’s ok now and will never be going back into a care home.
My mother lived with dementia for 20 years - 17 of these in a loving and caring care home environment. My mother was the longest resident they had - we were lucky and grateful to all the staff - her GP surgery were useless - we practically begged for assessments - I think they assumed because she was in a care home - their input wasn’t necessary but they still got paid to have her as a patient. Dementia is the cruellest of any disease as it robs you of the personality of your loved one - it’s the hardest of roles for care staff so do visit - feed your loved ones and give carers a break too... take them out if you can - fresh air is the best medicine for us all.
I fully agree with everything that people are saying. We are looking after my Husbands Mum who lives next door to us, we had a dementia meeting in July 2022 to assess Mums needs she has had Dementia since 2014 & is 92, living on her own, husband passed away Feb 2020 she goes looking for him & makes him a coffee & talks to him saying he is living in the shed @ the bottom of the garden.The dementia team was useless they said she had a UTI & couldnt do assesment Mum did havent one @ the time of the meeting we felt totally let down by the system.And now she is shouting outside most of the time her Husbands name & walking off up the road,neighbours are bringing her back, we are totally so upset.

Patricia, we are really sorry to hear this. This must be a very upsetting situation. Please know that support is available and we are here for you and your family.

Our Dementia Advisers can provide dementia information, advice and support. You can call our Dementia Connect support line on 0333 150 3456. Find more information about the support line, including opening times and other methods of contact:

You might like to talk with other people affected by dementia within our online community, Talking Point. You can browse and read others' experiences, or you can create an account to reply to the conversations: It's free to use and open day or night.

We really hope this is helpful for now, Patricia. And please do call the support line if you need us.

Alzheimer's Society blog team

This is my first visit on your site and it's nice to read. Thanks for sharing.
We Feel all your pain in the very same way. it is so so hard when you are already going through enough you have to fight on your own. The process for dementia patients (our mum) and their families needs to take top priority. We have been let down badly in a system that is flawed. We have been in the dementia system for nearly 4yrs now and mum is paying for a service which we expected her to receive. We definitely haven’t we feel exhausted and let down by the dementia system. Not only has mum suffered her loving family has too. Like so many other families we support each other for CHANGE ❤️
Hello Mandy, so sad to read of the tough time earlier this year for your loving family to have to get through. I experienced similar things at the end of 2020. I had been supporting my father with dementia difficulties since 2018. Looking back it becomes clearer to me how much all the horrible side of covid helped make an already strained health system into an often very bad one.The diligent staff are exhausted and struggling to cope with daily shortages of personnel and some supplies. I doubt they can feel job satisfaction much of the time , just "fire-fighting". No wonder they leave , adding to the many thousands of staff short in the care and NHS sectors. I have concluded that people at the top do not care enough to want to change things for the better, and we all suffer the devastation of seeing loved ones have an awful time that shocks and dismays us , making our health worse as a result . What a short-sighted system we have slid into. People are still being given false promises. I too felt angry with staff, and it can be difficult to separate poor attitudes from exhaustion at times. I wish I could have continued to care for my father at home but his needs became too complex. We do our utmost but there are times when it will never feel enough. I am still grieving and dealing with that feeling.
I’m am so sorry to hear of your sad story & your loss. Every word that you wrote is so true of the lack of support from our General Practitioners . Our Doctors surgery should be a haven for help, support & comfort. My husband was given his dementia. diagnosis over the phone 2years ago by the consultant at the memory clinic. Our Doctors have neither acknowledged the diagnosis or even rung us with a support package. I am dismayed that in this day & age the lack of empathy should be present in our fist port of call THE SURGERY.
I am so sorry that family have to suffer while supporting their loved ones. My mother was in hospital for 7 weeks ,she should have been home after 2 weeks, but care was not available. I couldn't stand the lack of care any longer so moved her to a nursing home. She is very quickly running out of funds while we are still waiting for a social worker assessment. I have now been told that her home will need to be sold to cover her costs. This is all so unjust,mum has worked hard all her life to leave something for my sister and myself. If she knew she would be heart broken. Why is social care so lacking for the venerable elderly? I have cared for her for many years at her home and am heart broken for her. Dementia awareness needs to be top of the agenda.
Thank you for sharing your story. It is so very sad and the photo with her grandson is beautiful. Lack of information and advice sadly sounds familiar- how can this be? Do health care professionals not know about dementia? They must do surely. My GP ( phone;consultations only) looks everything up online and sends me links… How on earth can families who have no internet access cope. Perhaps an elderly person caring for someone with dementia… Well done on doing the Memory Walk.
Hi So sorry for the loss of your Nan. In 2020/21 I went through the same experience. My mum was 92 and like your nan had UTI and ended up in hospital and I couldn’t see her for 5 weeks because of covid and like you said mum never came home was sent to a care home diagnosed with dementia . when I eventually saw her she couldn’t straighten her legs so painfully thin and ate very little purified food. Within two months mum passed away. It certainly wasn’t the ending I wanted for mum she deserved so much better. Such a cruel disease . I know it’s hard but Remember the happy memories with your nan.