Life takes a significant unexpected turn when a person learns they have dementia. Challenges can begin with the process of getting diagnosed. Doctors report feeling troubled when diagnosing people because they feel there is little they can do to help them. As a result, many doctors do not provide a dementia diagnosis initially or refer individuals to a ‘specialist’. Many individuals and families describe how they received a diagnosis as disturbing. The experience often involves being told the diagnosis, advised to get your affairs in order, offered medication and asked to come back in six months for monitoring.

This approach coupled with society’s misperceptions and stigma about dementia instills fear, confusion and despair in individuals and families rather than providing helpful information about living with a chronic condition. Health conditions such as cancer and heart disease have found how beneficial proactive information is for well-being. A proactive outlook fosters feelings of empowerment and resilience. Doctors who provide helpful information from the start enable people to manage their condition proactively instead of further disabling them.

We desperately need the health care sector and the community to support us to live beyond the diagnosis of dementia…If you offer us proactive, rehabilitative and enabling post-diagnostic strategies for the disabilities that result from the symptoms of dementia, we can live better lives beyond diagnosis, and the pathway of loss, despair, and focus on our deficits will be reduced. We need to be enabled, not further disabled.”

Kate Swaffer and John Sandblom
Board members of the Dementia Alliance International living with dementia

The time after being diagnosed is such an important time for gathering and processing information about dementia.  It is a time when many perceptions and expectations about living with dementia are made.  The Dementia Action Alliance (DAA) held numerous discussion groups in different parts of the country with individuals living with dementia and care partners to gather feedback and insights about what type of information would be especially helpful after being diagnosed. Following the discussion groups, the DAA collaborated with more individuals living with dementia to develop a handbook about living with dementia.  A similar process was followed with care partners to develop a handbook about living with dementia for them.

Besides the two handbooks, the discussion groups also recommended developing something that would help individuals and families talk about dementia.  Sometimes it is hard to find a starting point to initiate conversations with other family members and friends about living with dementia. Since there is nothing currently available, the Caring Conversation Cards were created to fill this need. So that more resources can be made available, the DAA sells the two handbooks and set of cards individually or together in a Toolkit on its online STORE.  Click here for more information.