Blog – Recognising Dementia with Lewy Bodies in Clinical Practice

Imagine you are interviewing someone. But the presentation is not the same as you expect from your contact with people with Alzheimer’s type dementia or vascular dementia. Unlike many people with Alzheimer’s disease a person with Dementia with Lewy Bodies (DLB) may well present having had some alternative diagnosis and treatment. Those of working age almost inevitably have had problems with work, reporting poorer concentration and attention, a change in their ability to take decisions, especially quick decisions,
difficulties in planning and undertaking tasks related to each other as well as difficulty judging 3D shapes and depth. 
So for instance, in leisure time, they might report increasing problems putting at golf as they misjudge where the hole is, or playing with Lego with their grandchildren. Slowness of thinking and movement is not uncommon. 
Sleep disturbance too, though we will return to that. Given how common depressive illness is in the population likely to be affected by DLB, it would not be surprising if the those presenting with the symptoms I outlined earlier had been treated with antidepressants at some point prior to referral, often unsuccessfully. Memory on the other hand is not a major concern in these early stages. 
Four things are worth exploring at this stage in the interview: sleep disturbance, movement, hallucinations and level of attention.

Sleep disturbance is very common in people with DLB, but not the typical middle insomnia or early waking associated with depression nor the broken sleep seen in many conditions associated with ageing. REM Sleep Behaviour Disorder (RBD) is a type of sleep disturbance where the person can report extreme restlessness during sleep and even acting out what can be dreams with violent content. This may of course be echoed by the person’s sleeping partner who may have moved to a different room as a consequence. 
Hallucinations are commonly vivid, visual and well formed. 
The person often has insight into these phenomena not being realistic, but nonetheless they can be very intrusive at home, at work, or socially and may not compatible with driving. Movements including walking can become slow and those movements requiring relatively sudden acceleration such as opening a bottle or jar can become difficult. Meal preparation involving chopping or stirring can be affected. Typing can also become harder. In sport someone might notice their golf swing becoming slower than their peers with a marked drop off in distance, problems with the pace of play at walking football, difficulties coordinating and maintaining a swimming stroke or other leisure activities being affected. Complicating all of these is a tendency for attention and concentration to fluctuate significantly with a tendency to drop out of conversations, appear to fall asleep unexpectedly or experience periods of staring into space.

Once you have got to this stage of the interview you are well on the way to recognising a diagnosis of DLB even in the absence of further cognitive testing or investigation.

In those spheres our good friends, the MMSE and MoCA still have value though much more can be obtained from watching how the person completes the examination. 
Attention may vary, visuospatial problems might be identified, suggestions of executive dysfunction might appear and memory be proportionately less affected, at least in early stages. Including a test of processing speed, such as the Digit Symbol Substitution Test (DSST), and Trail Making Test can be useful while adding only a couple of minutes to the overall assessment. Knowledge of the Unified Parkinson’s Disease Rating Scale (UPDRS) is helpful. Even performed fully to an exacting standard under research protocols does not take long but for general use, there is no need to test each movement. Watching the person walk, undertaking a brief assessment of rigidity and testing some rapid movements of the upper and lower limbs can be sufficient to establish the presence of Parkinsonism without meeting criteria for Parkinson’s disease.

Treatment options remain limited. 
But the use of cholinesterase inhibitors, clonazepam or possibly melatonin for RBD and the avoidance or very cautious use of antipsychotic drugs are all established but be aware that none of these options are free from adverse effects. Controlled trials of new drugs are limited in number. However organisations such as the Lewy Body Society have made sterling efforts to fund a range of research, ranging from fundamental science through to social aspects of care and relationships.

Although there are many changes to a person with dementia’s home setup which are beneficial in creating a safe place to live, for instance automatic night lights or removal of potential trip hazards, the field of environmental modification for potential therapeutic purposes, however, is less well studied. Here, there are opportunities for changes to be assessed and perhaps stimulate more academic researchers to become involved. 
For instance, while reducing evening naps might help overnight sleep, how might structuring naps during the day affect fluctuation of attention and concentration? Some people swear by power naps or mini-siestas after all. While good lighting of a room is beneficial, would sitting near a bright table lamp or having a head torch affect hallucinations? Would modifying the work of Playlist for Life by generating a variety of Spotify playlists lead to an improvement in attention and concentration? 
What could encourage depth perception?

Environmental modifications, if unsuccessful, can usually be changed back relatively easily. The key is recording accurately and in detail the effect of any intervention on the symptoms you are targeting. Such careful recording is an essential precursor to the development of any more substantial research project, while it already shows the prospective funder that something might well work in a real-life situation rather than with a population specially selected for research studies. Thinking about interventions and examining literature on what evidence might support that intervention, then discussing these with colleagues, gets you involved in the field of research. There are so many unanswered questions in the field of Dementia with Lewy Bodies that the prospect of having them addressed is very exciting.

Dr Peter Connelly

Author

Dr Peter Connelly is a retired Old Age Psychiatrist who spent much of his career in Tayside, helping to establish clinical trials for dementia and neuroprogressive disorders in Scotland. Now working with the Scottish Neuroprogressive and Dementia Network, he combines professional insight with personal experience as a former carer. In retirement, he enjoys music, golf, and time with his grandchildren.

@nrs-ndn1.bsky.social‬