Since starting her role in 2019, Consultant Admiral Nurse for Lewy body dementia, Rachel Thompson, has taken the service from strength to strength.
The role originally started as a two-year funding project between Dementia UK and the Lewy Body Society, both organisations recognising Lewy body dementia as one of the main subtypes of dementia and committing themselves to improving support for families affected. “In fact, it is thought to account for 10-15% of all those with dementia, with around 10% of people with young onset dementia (ie under the age of 65) having this subtype,” Rachel says.
Between June 2020 and June 2021, an evaluation of the role revealed that Rachel supported 71 family carers and people living with Lewy body dementia and feedback was extremely positive. Subsequently, funding for the role has been extended by the Lewy Body Society for another two years. Dementia UK has also provided funding for an additional Admiral Nurse specialising in Lewy body dementia to increase the support available
Over the last few years, the main reasons for people being referred to Rachel’s service include: significant difficulties with managing challenging symptoms, significant distress in relation to caring/adjusting to the diagnosis, changes in relationship, and difficulty with managing medication – the latter can include instances where people have adverse reactions to psychotic medication for hallucinations as well as Parkinson’s medication contributing to hallucinations.
Lewy body dementia: different to other subtypes
As Rachel notes, symptoms of Lewy body dementia can be significantly different to the more widely understood symptom of memory loss in dementia: “People can develop hallucinations or what is known as ‘Capgras or imposter syndrome’ which is a delusion of misidentification. REM (Rapid eye movement) sleep disorder can be another occurrence, which can cause vivid nightmares and violent movements during the night. As Lewy body dementia is closely linked to Parkinson’s, symptoms from this condition can manifest as well; this includes movement problems with balance, tremors and rigidity. Sudden fluctuations or changes in people’s awareness and abilities can also be confusing and very difficult to manage.”
Improving routes to diagnosis
As with other dementia specialist nurses, Rachel’s role is integral to improving routes to diagnosis for families, allowing them to be supported throughout the stages of the condition as well as linked up to other services.
With the National Dementia Care Strategy due to be published, it is hoped by the charity’s dementia specialists that there will be a renewed focus on improving access to diagnosis and post diagnostic support for a range of subtypes. For Rachel however, the need to improve diagnosis rates for Lewy body dementia has a heightened resonance: “Some cases of Lewy body dementia can be mistakenly diagnosed for Alzheimer’s disease or misdiagnosed as a psychotic or neurological condition,” Rachel says.
“Treatment and management of Lewy body dementia needs to be managed very carefully and as such specific diagnosis is of particular importance, including at later stages.”
“An accurate diagnosis can result from as full an overview as possible of a person’s symptoms and an understanding of those symptoms by professionals,” Rachel continues.
During the evaluation period Rachel offered 620 interventions to support families facing Lewy body dementia. One of the main interventions she has provided to families has been developing coping strategies and skills to promote psychological wellbeing. This includes support with developing strategies for managing anxiety, stress and low mood, which are common amongst family carers and people with Lewy body dementia. Rachel also provides tailored advice on how to recognise symptoms and adjust responses to reduce conflict and promote well-being.
In some cases, the person with dementia has been able to take part in the support offered by Rachel and working with couples also plays a part in Rachel’s role. “Due to the challenges which may present after a diagnosis of dementia, it’s important that lines of communication between the couple are open – this would include a focus on problem solving and future planning for any progression of the dementia,” Rachel says.
Many carers and people living with Lewy body dementia have felt supported by Rachel in their ability to cope, manage symptoms, increase their understanding of this subtype and their knowledge of other services which can offer support. Rachel’s role also extends to providing continuity in relationships despite a diagnosis.
It’s not just families who need support though. A recent Parkinson’s UK report has laid bare the challenges of fostering a culture of understanding amongst professionals. This is integral for families to get a diagnosis and access subsequent support, which Rachel fulfils in her current role. Over the year, Rachel has provided support to 1,331 professionals, including Admiral Nurses, Memory services, geriatricians, palliative care nurses, and Parkinson’s specialists, around the complexities of Lewy body dementia.
Hopes for the future
Having worked in dementia care for a number of years, Rachel became aware of the challenges faced by families affected by Lewy body dementia and so this post became an ideal opportunity to build a more positive and supportive future for those families. “This post has enabled me to enhance my knowledge in this complex field of dementia and develop new links with other specialist fields such as Neurology,” Rachel says.
I can now provide a more targeted, in-depth level of support for families and I am able to learn from and share new research as it emerges.
Over the next few years, Rachel will be developing new resources to increase understanding, including new leaflets for families.
Running in tandem to this, Rachel plans to develop training resources for a range of professionals to improve recognition, understanding, care and support of this subtype of dementia.
For information about the Lewy body dementia leaflets including one on managing hallucinations and one on and delusions and Capgras, visit lewybody.org/downloads.
Read or download our Lewy body dementia Admiral Nurse service summary evaluation report.
How Rachel supported Julie
Find out more about how Rachel supports families with Lewy body dementia