One key finding of the study described in this email is the value of in-person LBD-specific support groups! It seems at the time of diagnosis, physicians should encourage families to seek out LBD-specific support and information about coping with certain symptoms, especially hallucinations, fluctuating cognition, and sleep disorders. Of course, these symptoms are regularly discussed at our LBD-specific support group meetings.
This journal article out of the UK is based on 125 responses to an online survey about Dementia with Lewy Bodies. The majority of the respondents were caregivers. Some were those with DLB.
The conclusions were: “People with DLB and their family members are currently inadequately supported at diagnosis. There is a need to address information needs related to symptomology, medication and prognosis, including provision of emotional and instrumental social support.”
The symptom about which the most respondents said there needed to be more info and support was hallucinations. The authors noted that: “Hallucinations can be more problematic to others than to those experiencing them, with 85% of caregivers finding visual hallucinations very stressful or moderately stressful compared with 45% of patients.”
The next symptoms where respondents felt more need for info and support were fluctuating cognition and sleep issues.
The article made several other points worth considering:
- “People with DLB have significantly more depressive symptoms, and their quality of life rated by their caregivers is much worse than for people with AD.”
- “24% of caregivers for people with DLB (6% for AD) rated their cared for person’s health state at a level which a general population sample rated as worse than death.” Wow!
- “[Caregivers] of people with DLB report more stress compared with AD and vascular dementia, with daytime somnolence, one feature of cognitive fluctuations commonly seen in DLB, particularly associated with increased stress.”
- “Online resources…do not offer the emotional and instrumental social support from peers…”
- “The current lack of DLB specific support groups excludes access to the benefits of emotional and instrumental social support from peers. Whilst some dementia information is generic to all dementia types, specialist information about the physiological aspects of DLB, including how to cope effectively with DLB-related symptomology, and associated somatic and mental health comorbidities are rarely addressed.”
- “Poor community awareness and the lower incidence of DLB compared to AD often means that caregivers experience social isolation, which may explain the high proportion (80%) who wanted information about what strategies others in their position found helpful.”
Here’s the abstract:
International Psychogeriatrics. 2015 Sep 2:1-7. [Epub ahead of print]
Support and information needs following a diagnosis of dementia with Lewy bodies.
Killen A, Flynn D, De Brún A, O’Brien N, O’Brien J, Thomas AJ, McKeith I, Taylor JP.
Abstract
BACKGROUND:
There is a lack of knowledge regarding the information and support needs of people with dementia with Lewy bodies (DLB) and their families around the time of diagnosis.
METHODS:
A volunteer sample of patients with DLB and their family members completed a web survey hosted by the UK based Lewy Body Society in May 2014. This focused on past experiences of information and support received and what information and support needs would have been beneficial at the time of diagnosis.
RESULTS:
One hundred and twenty five adults responded to the survey. The majority were first degree relatives or spouses of people with DLB (n = 107%, 86%). Approximately 50% (n = 61) reported they had not received any tangible support at diagnosis. Thirteen categories of information needs were identified.
CONCLUSIONS:
People with DLB and their family members are currently inadequately supported at diagnosis. There is a need to address information needs related to symptomology, medication and prognosis, including provision of emotional and instrumental social support. Seeking the views of recipients of information and support is important in ensuring relevance and appropriateness prior to the development of interventions to improve the knowledge and coping skills of people with DLB and caregivers.
PMID: 26328546 (see pubmed.gov for this abstract; enter in the PubMed ID #)