Why aren’t people with dementia told their diagnosis Why aren’t people with dementia told their diagnosis? A systematic review of attitudes and practices of health practitioners Lee-Fay Low Kate Swaffer Margaret McGrath Henry Brodaty Email: lee-fay.low@sydney.edu.au Tweet: @leefay_low Prof Low is funded by an NHMRC Boosting Dementia Leadership Fellowship

Acknowledgements Low, L. F., Swaffer K, McGrath M, Brodaty H. (2018). "Communicating a diagnosis of dementia: A systematic mixed studies review of attitudes and practices of health practitioners." Dementia (London) Lee-Fay is funded by an NHMRC Boosting Dementia Leadership Fellowship

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Aim To systematically review practitioners' practices and attitudes in regards to communicating a diagnosis of dementia

Inclusion criteria Original, empirical data Quantitative, qualitative or mixed methods papers study that addresses the communication of a diagnosis of dementia and related attitudes and beliefs by health practitioners in primary care or specialist settings Paper in English language

Usually/routinely tell the person with dementia their diagnosis

Usually/routinely tell family the diagnosis

Diagnosis and communication are intertwined processes Sending them to a practitioner in dementia . . . the subtext is.. we want to know if you’ve got dementia or not

Decision made on a case by case basis What you’re presented with is not a patient with a particular score in the test, but a patient living a particular life in particular set of circumstances, with a particular range of family members and a particular range of expectations … Balance perceived benefits to patient (and family) and disadvantages at that point in time

Patient circumstances They’re actually better knowing rather than living with this bewilderment about what is happening for them Awareness of symptoms Severity of Dementia Family most were reluctant to diagnose early as they felt that a diagnosis of dementia was very difficult to give and had profound implications . . . professionals see little point in telling someone with advanced dementia their diagnosis. the diagnosis is really about is helping to prepare the family and the patients with that transition from when the patient isn’t always able to care for themselves

Practitioner characteristics Since we don’t have any really good medications. . . I’m not convinced we can do a whole lot for those people Beliefs regarding dementia and treatment efficacy Confidence in diagnosis, communication and management . . . practitioners felt inadequately trained for the task of early diagnosis, and that the diagnosis was difficult to accept for professionals as well as patients

Health and Social Care system During the diagnostic process, many referred patients to specialists for consultation, but this was sometimes difficult because of scheduling delays or distances some patients had to travel to reach consultants Access to specialists and diagnostic services Reimbursement for diagnosis and management Availability of services Dementia created heavier paperwork demands owing to frequent need for community, social service, and specialty referrals GPs interviewed indicated that the social services available were insufficient, inadequate, and complex

Cultural norms with regards to dementia To a mildly demented person, “Alzheimer’s” means “people sitting in a chair in the nursing home, being fed”, and that’s the only image that that word is going to have. And so, for that person, that word would be devastating Stigma in the community Label can produce emotional distress Common clinical Practice I’m very, very careful about um, destroying positive outlooks on life with the diagnostic label. Actually informing clients that they have dementia has never really been part of the culture . . . certainly you don’t routinely tell people they have dementia.

Why aren’t people with dementia told their diagnosis?

Patient circumstances Awareness of symptoms Severity of dementia Decision made on a case by case basis Patient circumstances Awareness of symptoms Severity of dementia Family Practitioner characteristics Beliefs regarding dementia and treatment efficacy Confidence in diagnosis, communication & management Health and Social care System Access to specialists and diagnostic services Reimbursement for diagnosis/management Availability of services   Cultural norms in relation to dementia Stigma in the community Label can produce emotional distress Common clinical practice

Autonomy Beneficence/ Non-Maleficence

Suggestions for improvement Multicomponent approach Guideline development on how to communicate a diagnosis Practitioner education and skills training Public health campaigns encouraging dementia help-seeking and destigmatising dementia Provision of post-diagnosis treatments and support for people with dementia and carers Sufficient reimbursement for practitioners for time spent managing dementia