Dementia UK’s Inclusive and Innovative Research Approaches

“The best practice in inclusive dementia care does not just involve families affected by dementia but is led by them – nothing about us without us.”

Nusaibah Hasan, a researcher on the EMPOWER Network interviewed Karen Harrison-Dening, our community partner who heads Dementia UK. Read on to find out more about Karen’s work.

Activities the organisation does that represents best practice in inclusive dementia care

From a charity perspective Dementia UK prioritises a co-design, co-production focused approach with meaningful engagement of people with lived experience in all that they do. For example, the Lived Experience Advisory Panel (LEAP), established in 2017, allows for people living with dementia and their family carers and supporters to share their constructive advice and feedback, which helps in the education of Admiral Nurses and also in providing information for the Dementia UK website, ensuring it is both up to date and in keeping with a lived experience.

We believe no one with dementia should have to navigate care alone and that anyone affected by dementia should be able to access a specialist dementia nurse. Admiral Nurses, provided in partnership with Dementia UK, offer expert tailored support for the person with dementia and their family, addressing all aspects of care and providing a holistic approach.

We embrace cultural diversity by educating Admiral Nurses from various backgrounds to support beneficiaries of all ethnicities and culture. Through developing a consultant Admiral Nurse position, which is dedicated to enhancing care specific to families affected by dementia from diverse communities.

Dementia UK focuses its activities on specialist dementia nursing care, inclusive dementia care research, lobbying and campaigning.

Why are these activities important for good practice and inclusive dementia care for the local community?

People with dementia who live alone are the most underserved and often go unnoticed by health and care systems until a crisis occurs. Estimates in 2024 indicate that over 40% of people diagnosed with dementia live alone. Everyone living with dementia has a human right to care. If we cannot get dementia care right for this large, underserved group, how are we supposed to get it right at all?

Many local communities in the UK have few or no dementia resources, especially in rural, remote and coastal areas where many older people live. The best practice in inclusive dementia care does not just involve families affected by dementia but should be led by the needs of those affected – needs, preferences and wishes must shape research, service planning and direct care. The principle of “nothing about us without us” must be put into practice and drive all future dementia care and research.

What impact does your work have on people living with dementia and amplifying lived expert voices?

Charity work and publications

As a charity, we promote personal stories in podcast, video and written formats to give people affected by dementia a voice. We have published two books relating individual stories and providing an expert commentary on the mechanisms of the issue and then followed by advice from Admiral Nurses:

What You Really Want to Know About Life with Dementia: Real stories and expert advice for family, friends and people with dementia (2022) (Now also translated into Welsh language).
What You Really Want to Know About Working with Dementia: Real issues and expert advice (2024).

Admiral nursing and gaps in care

Admiral Nursing is the only defined model for dementia care nursing with measurable operating and practice standards. It focuses on the needs of the person with dementia and family carers and treats the family as a unit. Care for people with dementia is often complex because many have additional comorbidities and multimorbidities. Medical teams such as geriatricians provide clinical treatment, but nursing input is often limited and does not have a similar specialist focus or education but relies on generic nurse training. However, the needs of older people can often be complex and differ greatly from younger adults.

A dementia care advisor can meet some basic information needs, but Admiral Nurses offer more holistic clinical advice and support. However, Admiral Nursing is not expanding quickly enough to meet demand. There are far fewer Admiral nurses than, for example, specialist cancer nurses despite dementia being as prevalent as cancer.

What key factors have made your work and organisation successful?

The voices of people affected by dementia and their expressed needs, to which we aim to respond.
We are truly listening to the people with dementia and their family carers and supporters and want to work with them.

Any national expansion projects the organisation is planning to do on inclusive best practices in dementia care and future goals?

We aim to have a presence in all four countries of the UK. We are beginning to gain a foothold in all four, but progress has been challenging. One of our advice texts, based on personal stories, is now translated into Welsh.

We have recently extended peripatetic (traveling) clinics to all four countries, fully funded by Dementia UK because it is difficult to engage health and care commissioners in many areas to secure support for people affected by dementia.

From a research perspective, the Dementia UK research and publications team is working with academics across all four countries, and internationally, on a wide range of topics.

Future goals:

To promote the needs and care of people affected by dementia.
To be part of a movement of like-minded people.
To focus on an individual -centred approach to dementia care instead of a one-size-fits-all model.