The Imagine Series

the Imagine Series is a patient and caregiver involvement project in the UK that identifies, maps and attempts to understand the unmet needs and main concerns of patients and caregivers with the goal of shaping future research agendas. In 2017, it chose chose Dementia with Lewy Bodies (DLB) as its pilot project, combining its three key areas of expertise: evidence synthesis, citizen insight and technology to meet three key aims:

1. To understand the unmet needs and challenges of DLB patients and care partners
2. To identify gaps in the DLB research area
3. To identify opportunities emerging through new developments in the horizon

To identify the research presently available about DLB, the group searched for found 400 studies. Of these,

• 48% of research papers focused on diagnosis
• 20% highlighted dementia treatment
• 10% related to care partner experience

They found outcomes of clinical trials, by order of occurrence, related to:

1. Cognition
2. Sleep
3. Other
4. Motor issues
5. Impact on carer
6. Attention
7. Exploratory
8. Aggressiveness and irritability
9. Hallucinations
10. Diagnosis

To identify care partner needs, the project utilized a workshop involving DLB care partners and an online questionnaire to gather information.

Care partners found the following DLB symptoms challenging, listed by order of challenge:

1. Hallucinations
2. Sleep disturbances
3. Lack of interest or motivation
4. Continence
5. Problems with thinking and concentration
6. Mood changes (including irritability and aggression)
7. Anxiety
8. Movement difficulties
9. Loss of appetite and swallowing problems
10. periods of excitement

Challenges relating to caring for someone with DLB, by order of those considered most challenging were:

1. Caregiver stress
2. Caregiver anxiety
3. Caregiver low mood
4. Feeling burdened as a caregiver
5. Impact of person with DLB behavior on caregiver
6. Caregiver's quality of life
7. Caregiver social isolation
8. Availability of respite care
9. Healthcare costs
10. Feeling able to meet the demands of being a caregiver

How do you see yourself in these results? Do you agree? Do you see some areas more or less difficult for you?

Re the VOICE's goals:

• The above lists are a good representation of the needs and challenges of DLB care partners. Carers recognized "meeting the demands of being a DLB care partner" as a priority but did not identified as a major challenge. However, caregiver stress and anxiety were both seen as a major challenges.
• They found a huge gap between those needs and the present research. Hallucinations were the most challenging symptoms identified by care partners, but treating this symptom is under-represented in clinical trials. In fact, clinical trials are mainly focused on "curing" DLB or treating the associated cognitive symptoms. (comment: We definitely do need more research on those non-cognitive symptoms, but finding a cure has high value for the future and I'd hate to see it sidelined.)
• They found emerging opportunities for more research on treatment methods for the most challenging symptoms associated with DLB such as hallucinations but no "new developments" were noted.

About The Imagine Series: It is a collaboration between VOICE (Valuing Our Intellectual Capital and Experience) and the UK's National Institute for Health Research (NIHR) Innovation Observatory. The Innovation Observatory identifies, monitors and collates evidence around new and emerging health technologies worldwide. VOICE, is the arm of the Observatory that interacts with the public to find unmet needs and opportunities for better ageing and health research. The VOICE director, Lynn Corner, was the Imagine Series presenter at the International LBD Conference. 

For more information about Lewy body disorders, read our books: A Caregivers’ Guide to Lewy Body Dementia Managing Cognitive Issues in Parkinson's and Lewy Body Dementia Responsive Dementia Care: Fewer Behaviors Fewer Drugs Riding A Roller Coaster with Lewy Body Dementia: A Manual for Staff Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.