While numerous works have discussed formulation of a diagnosis of dementia there is little work to date on the practicalities involved in disclosing this diagnosis to a patient. We therefore outlined some of the key aspects of dementia diagnosis disclosure in a recent commentary published in the Quarterly Journal of Medicine.
Disclosing the diagnosis
A diagnosis of dementia should be disclosed in the vast majority of cases. The temptation to massage the diagnosis by using euphemisms such as ‘memory problem’ should be resisted. In much the same way as describing cancer as a ‘growth’, this leads to misunderstanding and the clarity of the subsequent message is lost. Among people with Alzheimer’s disease, less than half reported being told of their diagnosis by a healthcare professional yet almost all patients with dementia wish to be fully informed of their diagnosis 1 .
As with most chronic illnesses, disclosure of diagnosis should be followed by outlining a management plan. Discussion should avoid overemphasis on pharmacological therapies, as dementia, like many medical conditions in later life, responds better to a multimodal care plan rather than a narrow pharmacology-based strategy.
It is also vital that strategies proven to reduce the risk of further cognitive decline are emphasized. This includes maintaining a healthy diet, regular exercise and management of cardiovascular risk factors. Medications such as benozdiazepines and anticholinergics should be avoided if possible and it is also often surprising how few patients are aware of the negative effects excess alcohol can have on cognition.
Accurately predicting future cognitive and functional trajectory in dementia can be challenging and is influenced by individual factors such as age, educational attainment and interval episodes of acute illness. It should be noted however that almost two-thirds of people with dementia in Ireland currently live in the community rather than in nursing home care2, and one in twenty people diagnosed with dementia require admission to nursing homes within 3 years3.
It must also be stressed that while dementia by definition causes a degree of functional impairment, most people with dementia live fulfilling lives with good subjective quality of life when compared to their peers.
Dementia is a complex illness and time must be taken to outline these complexities in a manner accessible to both the patient and family. Consultations of this nature are not suited to short time slots in a busy clinic, and it is important that there is sufficient time to address all concerns.
While it is crucial to acknowledge and address the significant implications being diagnosed with dementia can have for an individual’s future mental and physical health, at the same time it is important to reinforce the evidence that most people with dementia do not require admission to nursing home care and continue to report good quality of life.
Robert Briggs & Sean Kennelly,
Age-related Health Care Department,
- Pinner G, Bouman WPP. Attitudes of patients with mild dementia and their carers towards disclosure of the diagnosis. Int Psychogeriatr 2003; 15:279–88.
- Pierce M, Cahill S, O’Shea E. Prevalence and Projections of Dementia in Ireland, 2011–2046. Genio Dementia Learning Event 2013; https://www.genio.ie/system/files/publications/Dementia_Prevalence_2011_2046.pdf (18 August 2017, date last accessed).
- Wattmo C, Wallin AK, Londos E, Minthon L. Risk factors for nursing home placement in Alzheimer’s disease: a longitudinal study of cognition, ADL, service utilization, and cholinesterase inhibitor treatment. Gerontologist 2011; 51:17–27.