Life doesn’t end when dementia begins

Growing old should be something to celebrate.  But throughout my work speaking and listening to what matters to older people in later life their fear of dementia remains a recurring worry.  Stigma, worry, loss of friends and loss of independence are just some of the anxieties and concerns that I hear.  But it doesn’t and shouldn’t have to be like this.  Life doesn’t end when dementia begins. 


A responsive and personalised NHS integrated with social care and housing, meeting the needs of people with dementia as their condition progresses is vital.


Dementia rarely travels alone

Dementia is not an inevitable part of ageing, but the biggest risk factor for dementia is age. Figures show that two in every 100 people aged 65 to 69 years have dementia, while this figure rises to 19 in 100 for those aged 85 to 89, the older you are the more likely you are to develop the condition.  


Dementia rarely travels alone; 90% of people with dementia are living with another long-term condition, such as depression, hypertension or diabetes. 


This presents challenges to the NHS, as such conditions remain undiagnosed. 

Diagnosis is the first step

Avon and Wiltshire Mental Health Partnership NHS Trust, which covers a footprint stretching from Weston-super-Mare to Swindon, has focused on increasing dementia diagnosis to above the national average of two-thirds.  Getting a dementia diagnosis can be a worrying experience, especially knowing there is currently no cure. But this is only the first step.  

Accessing personalised and tailored post-diagnosis support is a vital gateway to have a good life with dementia in later life.  There are many innovative and pioneering services and support across Avon and Wiltshire involving the Clinical Commissioning Groups, local authorities and voluntary sector and the Mental Health Trust working collaboratively and importantly with people living with dementia to design and deliver personalised support.  

Supporting people with dementia and their families

One example of this is the Thinking Together post-diagnosis Group in South Gloucestershire, run by the memory service, that aims to respond to the effects a diagnosis of dementia can have on an individual and their family members. This is a 7 week course for the individual and a family member. The group is held every week for 2 hours and is run by specialist staff from the memory service.

The group is for people who are newly diagnosed and allows the opportunity to meet with others in a similar position, to gain information, and to look at ways to cope better with the condition. The course covers the diagnosis, memory strategies, communication, occupation, life story and what's next. However because the groups have a maximum of 6 individuals and their family members each group is different and allows for information to be relevant to each individual.

So much more to do

Such post-diagnosis support provides a vital life-line for people with dementia and their families and helps manage the progression of the condition.  


But we must go much further than this. Creating communities that are accessible and include people with dementia is also necessary.


Pioneering work across Avon and Wiltshire area - creating dementia friendly communities - has shown the difference small changes in our communities can make to the lives of people with dementia by enabling them to do the very things they want and enjoy in later life – such as going to the cinema, shopping, enjoying time with friends and participating in the local community.

Time to raise our ambitions

Whilst good progress has been made in addressing stigma, neglect and attitudes towards dementia, the job isn’t done.  We now need to take forward this progress and raise our ambitions for people with dementia. 


Commitment and will alone will not work – the best way to ensure people with dementia can live well in later life is through creating meaningful involvement of the very people who are living with the condition.  


Surely it’s a prize we all want to see.

Jen Hartley-Bond is the Head of Communications and Engagement at Avon and Wiltshire Mental Health Partnership NHS Trust


Have you been affected by any of these issues?

If you have been affected by any of the issues described in this blog, or simply need someone to reach out to, you can call the Alzheimer's Society helpline for information and advice on 0300 222 1122 or ask a question on their online community 'Talking Point'.

The views and opinions expressed in this article are those of the author and do not necessarily reflect the policy or position of Independent Age.