Are you outraged? Me, too! Well, okay, we may be outraged for different reasons but if you’ve found your way to this blog, I bet we agree on at least one thing: We are outraged that people we love have to live with Alzheimer’s; we’re especially distressed that there is no cure yet, and we find it maddening that there isn’t nearly enough money going to fund the research that will help us find an answer. Ever since my mother was diagnosed with Alzheimer’s more than 20 years ago, I’ve been hungry for a way to make a difference in this fight and settled on one realization:
Unless we change the policies of this nation, this state and the communities in which we live, we will remain standing in place.
We can’t afford to do that; too many people are struggling with Alzheimer’s right now; too many families are forced to make tough decisions, such as whether to keep working or stay home to care for their spouse or parent; too many folks are faced with the weight of overwhelming financial and emotional burdens.
Being engaged in Alzheimer’s advocacy doesn’t mean you have to be an expert in medicine or health care. It doesn’t mean you turn into a “policy wonk” who spends hours reading research and writing white papers. It doesn’t mean something obscure and frightening. What it does mean is that you care passionately about an issue; you have real experience – either personal or professional; and you want to let others know how important it is to improve the life of people living with Alzheimer’s.
I’m sure you see some example of advocacy every day. It can be a senior group in your community testifying at city council meetings about the need for more low-income housing. It can be non-profit organizations making the case for more transportation options to help seniors and the disabled get around town. It can be Adult Day Health Centers petitioning the State legislature that the Governor’s proposal to eliminate these programs is short-sighted, expensive and just plain wrong. Or, it can be as simple as making sure that people with Alzheimer’s are included in the discussion – whether it’s about transportation, housing or health care needs, issues facing people with Alzheimer’s must be represented.
While many programs advocate for their own survival, the Alzheimer’s Association is the only organization (at least the only one that I know of) that advocates for all people with Alzheimer’s and their families, regardless of their situation, regardless of whether they live at home, in the community or in a nursing home, regardless of the level of their cognitive impairment. The goal is to reflect the wide Alzheimer’s community and address policy decisions that have an impact on those living with the disease.
I look forward to sharing the “world of advocacy’ with you and hope that you will communicate your ideas for making California and your community a better place for people living with Alzheimer’s and their families.
And if you’re outraged like I am, please leave a comment below to tell me why!