Every person with a new diagnosis of dementia in Scotland is entitled to a minimum of one year of Post Diagnostic Support (PDS) from a named person – such as our Dementia Link Workers - who will work alongside the person, and those that are close to them.
Alzheimer Scotland’s 5 Pillar Model provides a framework for people living with dementia and their families and carers with the tools, connections, resources and plans to allow them to live as well as possible with dementia, and prepare for the future. These key pillars are essential to supporting people after their diagnosis.
Support doesn’t follow step by step process – it’s very much guided by the individual. However, a significant portion of time is spent helping people understand the illness and managing the symptoms of their particular type of dementia. There are over 100 different types of dementia - and here’s an alarming fact – so many people we support are given their diagnosis of dementia, but not always told which type.
Sophie is a 74 year old woman. She is a wife, mother and grandmother. She dedicated years of her life to her family and always put their needs above her own. Sophie was diagnosed with Vascular Dementia in July 2018. Sophie was referred to Alzheimer Scotland in August 2018 for Post Diagnostic Support (PDS), and worked very closely with our Link Worker, Marian Garcia.
The delivery of Sophie’s diagnosis was a particularly difficult and traumatising experience. The communication was not person centred and there was little explained about dementia. As a result of this, Sophie believed death was imminent. She went straight home, cleaned her house and started to plan for her life ending, even apportioning belongings to family members. The trauma from her diagnosis was so significant, it took a long period of time before Sophie could come to terms with her diagnosis. You can hear Sophie talk about her diagnosis experience here:
Sophie’s self-confidence was extremely low at the start of her PDS journey. She had experienced chronic anxiety and depression before her dementia diagnosis. Sophie wouldn’t attend groups, and felt she had nothing she could offer or contribute. Marian and Sophie met approx. every 6 weeks for the duration of her PDS, across an 18-month period. Hear Sophie talk about the support she received in her own words:
Marian Garcia, Sophie’s Link Worker
"Sophie is fine example of someone who has learned how to live well with dementia. Her confidence has grown exponentially, having gone from not attending groups to now contributing, supporting her peers, campaigning and helping others with a recent diagnosis. Sophie self-manages very well. She knows the strategies she needs to cope, and she knows physical health is good for her mental health. Before COVID, Sophie had a regular gym and swimming routine. She lost a lot of weight and reported feeling empowered and confident.
Lockdown and the loss of routines and informal support has had such a negative impact of so many of the people we support. Not being able to continue attending to the gym and swimming had a detrimental effect on Sophie’s mood, and watching the news increased her fear and anxiety. Sophie’s mental wellbeing became a huge focus of the support we’ve provided over this last year, however Sophie has excellent insight and knows what to do to improve her mood when it’s low. Without Post Diagnostic Support, I believe we’d be seeing a very different Sophie today. She is an inspiration."
We would like to thank Sophie and her husband Robert for their openness, their honesty, their candour, and their time. A final word from Sophie:
Actions speak louder than words
This Dementia Awareness Week, we’ve been asking people to make a pledge of support, and we’ve been overwhelmed by the public response to this so far. Every action counts. Our hope is that more and more people don’t shy away from talking about dementia, and to listen. And we mean properly listen - and seek to understand.
So many people with dementia share Sophie’s experience, and tell us how it feels when people they know turn away from them, or even avoid them, or talk to the person they’re with instead of them. By just finding out a little bit more about dementia, you can help someone feel seen, heard, understood – and valued.
Here are some quick ways you can help: