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Dementia Action Week: Jo and John’s story

16 May 2023

Jo and John both have a dementia diagnosis. Find out how advocacy supported them to both be heard in a review of their care.

Jo and John have been married for many years and happily lived together in a bungalow until Jo had a fall, and was admitted to hospital. Both Jo and John were then diagnosed with dementia. As they needed some additional support, Jo and John were placed in a care home, in a joint room so they could stay together. 

John is quite a sociable man and enjoys chatting with people. Jo is quieter and just enjoys spending time with her husband. Jo and John’s biggest anxieties are around being separated. 

As Jo and John don’t have any close family members, social care referred them for a Care Act advocate to support them with a review after living in the care home for 3 months. 

Care Act advocacy

When it’s difficult for a person to be involved in decisions about their care, and they don’t have friends or family who can offer support, a Care Act advocate like Stacey can make sure their needs and wishes are heard.

Stacey met with Jo and John multiple times, on different days and at different times of day, to get a good understanding of how things were for them at the care home. To make sure they felt comfortable and to support them to engage with the process, Stacey always met them together as a couple. She explained her role as an advocate, and why she was supporting them through the review.

She also spoke with staff and got background information to get as full a picture as possible of what was important to them both.

During this time, Stacey learned that Jo was on an end-of-life plan.

With so much of their current comfort dependent on their relationship, it was important that the social care review took this into account.

Planning ahead

Once Stacey felt she had built a good relationship with Jo and John, she contacted the social worker to arrange the care review. She also went through the completed paperwork with Jo and John, to ensure they were both happy with what was being decided.

The review acknowledged that John would need some additional support when Jo died. The care home staff created a plan to support John to build closer relationships with staff and other residents, by joining in activities when Jo has her pamper sessions. They agreed to help the couple to create some photo albums of their time together.

Jo and John also needed practical support to manage their finances, as they were no longer able to do this themselves. The social worker arranged a deputyship, so they can access their money and, with support, spend it how they choose.

The social worker thanked Stacey for supporting the couple through the process. John thanked the nice, helpful lady’ too.

* To protect people’s privacy we don’t use their real names, but their stories are genuine.

Getting a dementia diagnosis

This Dementia Action Week, the Alzheimer’s Society is encouraging individuals and their families to seek a timely diagnosis and avoid reaching crisis point.

Many are facing dementia alone, without access to the vital support that a diagnosis can bring.

If you’re concerned about possible dementia, the Alzheimer’s Society has a symptoms checklist you can complete.

Go to the Alzheimer's Society website