1. 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
Prof Low is funded by an NHMRC Boosting Dementia Leadership Fellowship

2. 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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5. Respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons
Non-discrimination
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6. The Code of Health and Disability Services Consumers' Rights (New Zealand)
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Right 3 - The right to dignity and independence.
Right 4 - The right to services of an appropriate standard.
Right 5 - The right to effective communication.
Right 6 - The right to be fully informed.
Right 7 - The right to make an informed choice and give informed consent.
Right 8 - The right to support.
Right 9 - Rights in respect of teaching or research.
Right 10 - The right to complain.

7. Principles of Medical Ethics
Autonomy - right to self-determination
Beneficience – do good
Non-Maleficence – do no harm
Justice – be as fair as possible when allocating resources
Dignity – everyone is treated with respect
Truthfulness/Honesty- informed consent

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

9. 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

11. Usually/routinely tell the person with dementia their diagnosis

12. Usually/routinely tell family the diagnosis

13. 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

14. 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

15. 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

16. 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

17. 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

18. 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.

19. Why aren’t people with dementia told their diagnosis?

20. 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

21. Autonomy
Beneficence/
Non-Maleficence

22. 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