Our work

We currently run a wide range of work programmes across Greater Manchester including the ones listed below.


Delirium

Delirium is a condition which causes a short-term confused state and develops over hours and days; as a result of underlying illness. People living with dementia are more likely to experience delirium and if undetected and treated, it can lead to much poorer outcomes. Dementia United developed a Greater Manchester approach to delirium with a person-centred pathway and key standards focused on early detection, assessment and treatment. These standards form the basis of the three areas of the delirium work programme outlined as: Community delirium toolkit; Hospital delirium programme and resources; Delirium training and resources. Read more

End of life care

Dementia and Alzheimer’s disease have been the leading cause of death in England since 2015 (Office of National Statistics). However, dementia is still not universally recognised as life-limiting and when people are in the dying phase, they are often no longer in contact with dementia specialists (58% of people with dementia will die in the care home setting). It can be difficult to predict disease progression and to identify the dying phase. Advanced dementia is also associated with increased symptom burden but due to the inability to communicate, this can be interpreted as general agitation which is often not properly investigated. Consequently, people with dementia may receive sub optimum end of life care, including inadequate pain management. Follow the link to find out more about the Dementia United end of life care project that aims to tackle these challenges. Read more 

Greater Moments (formerly the lived experience barometer)

People living with dementia and those who care for them are at the heart of all our work. They are invited to all of our meetings, events and workshops. Our partners, tide, together  in dementia everyday, are charged with ensuring the real experience of carers underpins every action we take.

In partnership with Social Sense, we’re developing a tool to test, measure and capture data on the real experience of people living with dementia and those who care for them. Operating in real-time the data will be used to both personalise their care and inform our future work. Read more

Housing

Healthy Homes is a crucial part of improving the lives of people with dementia and their carers – for better or worse, housing has an enormous impact on our lives. Whether through making the home more suitable for people diagnosed with dementia or by building stronger coalitions for a more diverse housing offer in Greater Manchester, our approach is characterised by partnership working, innovation and an approach which puts the person (and their rights) at the centre of our plans. Find out more about how our approach can help support people living with dementia and their carers through housing. Read more

Mild cognitive impairment

Mild cognitive impairment is a thinking and memory difficulty that is not significant enough to interfere with your daily life but is a recognisable change for you and those around you. It is estimated to affect 6-36% of people over 60 years, with 6-15% developing dementia annually. There is no NICE guidance on how to diagnose and manage mild cognitive impairment and what happens after you receive a diagnosis varies across Greater Manchester. Our mild cognitive impairment project aims to address the uncertainty around mild cognitive impairment diagnosis and post diagnosis; whilst embracing opportunities to make positive lifestyle changes and to be involved in research that may lead to the prevention or delay of dementia. Read more 

Post-Diagnostic Support

Dementia United is seeking to improve the support and services which people living with dementia and their carers receive after diagnosis. There are three key projects in this area: Greater Manchester dementia care pathway – which sets out the support and services that people should receive, wherever they live; Greater Manchester dementia wellbeing plan – which promotes personalised planning conversations with people living with dementia about their needs and wants; Greater Manchester dementia care navigation standard – which sets out a single understanding of care navigation to help identify and access support. Read more

Research

Help shape the future of dementia care and support. During these challenging times, as we all try to adapt to a new normal, keeping ourselves and our loved ones safe is at the top of everyone’s priority list, especially if yourself or a loved one is living with dementia. The challenges social distancing bring for those with a dementia are wide-reaching and as varied as the disease itself; that’s why it’s so important that we hear from patients and carers in this challenging time to help us understand their needs and concerns. Dementia and COVID-19 research is adapting, offering patients new, safe, ways to ensure their voices are heard and enabling researchers to understand individual concerns about the impact COVID-19 has had on their lives. For those who have the capacity and time, Join Dementia Research offers access to a number of studies which can be completed online or over the phone, you can find out more by calling the Alzheimer’s society on: 0333 150 3456, Alzheimer’s Research UK on: 0300 111 5 111 or visiting their website: www.joindementiaresearch.nihr.ac.uk

Young Onset and Rarer Forms

It’s estimated there are over 42,000 people in the UK diagnosed with young onset dementia (a diagnosis received under the age of 65). Having young onset dementia brings unique challenges. For example, diagnosis can be more difficult as a person is a lot more likely to have a rare form of dementia that won’t present as memory loss; it is also more likely to be inherited. We are lucky to have a specialist diagnostic centre at the Salford Cerebral Function Unit however referrals from across Greater Manchester vary. People under the age of 65 are more likely to still be working and possibly have younger families and financial commitments. As young onset dementia is rare compared to dementia over the age of 65, services are often not age appropriate. There are specialist groups across Greater Manchester but not in every locality and due to the smaller population, individually these may not be very well attended. Follow the link to find out more about the Dementia United young onset and rare dementia project. Read more 

Other work

Dementia United also undertakes work outside of the key focus areas to support emerging needs. This work has most recently focussed on the response to COVID-19 by dementia care and services in Greater Manchester. The works includes mapping the impact of COVID-19 on memory assessment services and post-diagnostic support, and gathering resources to support the response of care homes, primary care, and memory assessment services to the pandemic. Read more 

We’ll know we have a 21st century NHS when it supports people with dementia as well as it does people with cancer.

Andy Burnham, Mayor of Greater Manchester

The more we got involved, well it became more and more interesting and to actually realise that you’re being listened to, really in a meaningful way and we’re now seeing that impact coming back.

Liz and Mike are involved in several workstreams of Dementia United and Liz is a member of the Dementia Expert Reference Group