The diagnosis brings feelings of shame, frustration, denial and a lack of understanding as to what the next step should be. Thus, there is an overwhelming need for the Alzheimer’s community to join forces with other groups who are already fighting for the rights of the disabled.
As a community, we need to take action in the following ways:
- Talk to people with dementia AND their caregivers. Treat them as equals just like a person diagnosed with cancer or heart disease.
- Remember each person with dementia is unique and should be asked what makes them comfortable and what they see their future to be.
- Be proactive in involving the person with dementia in activities that make them feel valued.
- A person diagnosed with dementia wants to be treated as a normal person, even though they may be slower, in thought or action, and seem somewhat confused. This person wants to be heard and may want to share his/her experiences.
To overcome the stigma of dementia, WE MUST:
- Educate the public in the meaning of dementia and the treatments available.
- Reduce the isolation of people with dementia. Inclusion is vital.
- Give the diagnosed person a voice. Their experiences and feelings are key to the eradication of this disease.
- Recognize and respect the rights of a person with dementia and their caregivers.
- Involve people who have been diagnosed with dementia in their local communities.
- Support and educate family members and paid caregivers.
- Improve the quality of care at home and in care-giving communities.
- Improve training of primary care physicians in the understanding and diagnosis of dementia.
- Call on our local, state and federal governments to create proactive plans to embrace and treat the needs of a person with dementia.
And, above all, continue and increase the research as to how we address the stigma of dementia, its treatment and eventually its cure.
Envision a world without stigma, a world where a person with dementia might be different, but they are still a member of our society. Physicians would diagnose and prescribe, knowing there is support for both the diagnosed person and his/her family. Government agencies would be proactive in the funding of research, and the assisted living and other care communities would provide the ultimate in loving care for these individuals and their families.
Alzheimer’s Stigma: Part One of A Four Part Series