Patient discussions

Physicians should discuss diagnosis, management, and prognosis with the patient, their family, and any other carers.[38] It can be helpful to describe DLB as an overlap between Alzheimer's disease and Parkinson's disease to make the nomenclature less confusing. The family/carer should be made aware of the inevitable progression of both cognitive and motor symptoms. A problem-oriented approach to management should be agreed.

Discussions about future care (including advance decisions) and financial matters should take place with the patient, their family, and carers at an early stage.[38][39] Legal counsel may be required in cases requiring guardianship and the handling of finances, especially because DLB affects executive functions that are key to making responsible financial decisions. At each care review, the patient should be given the opportunity to assess and change any advance statements and decisions they have made.

There is evidence that carers find depression, cognitive fluctuation, and especially the psychotic symptoms in DLB particularly difficult to cope with.[43] Care, therefore, needs to be taken to review the mental wellbeing of carers and to include their support in the care plan formulated. The Lewy Body Dementia Association website is a useful source of information for carers: Lewy Body Dementia Association Opens in new window Access to community resources including adult day programmes, respite care, support groups, and counselling services benefits patients and families throughout the disease course. Long-term arrangements should be made for caregiving and residence. If the patient is living in the community, safety issues including being left alone, activities of daily living, medication, falls risk, and driving considerations should be addressed.

Discussion of driving is an emotional topic, frequently bound up with a patient’s need for maintaining autonomy. Driving privileges, especially in patients with visual hallucinations, should be recommended to be restricted. The American Academy of Neurology has published a guideline for the assessment of driving risk in dementia.[41] Local and national laws vary about reporting patients with dementia and driving impairment, and these should be followed by practitioners.[41][78]

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