34993678 - gold compass rose

“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 a diagnosis and the pathway of loss, despair, and a focus on our deficits will be reduced. We need to be enabled, not further disabled.” 


[Kate Swaffer and John Sandblom, Board members of Dementia Alliance International living with dementia]

Life takes a significant unexpected turn when a person learns they have a form of dementia. Challenges often begin just receiving a diagnosis.  Many doctors are not comfortable delivering a diagnosis of dementia and often refer individuals to other doctors. When a diagnosis is delivered, typically there is no information provided about how to live with the condition that will last for years. 

 The time following a diagnosis is important for gathering and processing information. During this time many perceptions and expectations about living with dementia are established. Learning how to be proactive fosters feelings of empowerment that, in turn, helps people build a problem-solving mindset and resilience – vitally important for well-being and supporting a purposeful and engaging life while living with the symptoms of dementia. 

 Researchers have found beneficial effects of positive thoughts and emotions.  There is vast scientific literature about how negative emotions harm the body. Some health benefits that a proactive and positive mindset can provide include (Mayo Clinic): 

  • Lower levels of distress 
  • Better psychological and physical well-being 
  • Lower rates of depression 
  • Better coping skills during times of stress and hardship 

 For other health conditions such as cancer and heart disease, doctors have learned how beneficial receiving written information and support are for well-being.  This approach is needed for dementia. 

How DAA is helping individuals and families live proactively ~

DAA developed two highly acclaimed handbooks, one for individuals with dementia and the other for family and friends, to provide helpful, proactive information about living with dementia. Click here for information about “Living with Dementia: An Unexpected Journey,” and click here for information about “Living with Dementia: The Indispensable Handbook for Family and Friends”.

DAA hosts two monthly podcasts, This Dementia Life and Professional Insights, that provide helpful, proactive information about living with dementia. In addition, DAA has a weekly online discussion group hosted by individuals living with dementia on Thursdays at 1:00pm Eastern time. Click here for a schedule of discussion topics.