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Our View – Improve options for families living with Alzheimer’s

Many of the quotes in today’s story about Jim and Ann Murray will be all too familiar to anyone who has watched a spouse, parent or grandparent deal with Alzheimer’s disease.

“One of the sad thoughts to me,” said Jim Murray, who at 63 is now the primary caregiver of his 60-year-old wife, “is I can hardly remember when I could think of her as being an on-her-own person. That seems like 100 years ago. I just can’t hardly comprehend that.”

“I’m like 30-something,” said the couple’s adult daughter Amy, “and I feel like my parents have gotten divorced. It just feels so big like that.”

“At first it was all about my mom,” said their 35-year-old son Brett. “Now it’s become all about my dad, in a way. It’s been hard to see him struggle, knowing this isn’t how he wanted his retirement to be.”

As tragic as the Murrays’ story is, it’s only one of 69,000 in Iowa and 5.3 million throughout the nation.

And even more tragic is how scientists are not much closer to finding a treatment than they were 10 or 20 years ago. Much has been learned about the genetics of Alzheimer’s, about the risk factors and the age brackets affected, but scientists still haven’t figured out what causes the disease and what cures it. Nor have they found a reliable means of early detection.

As Tricia Brown writes in today’s story, “Science has failed Jim and Ann.”

It’s because of the growing number of families such as the Murrays — families who are left hoping against hope that a treatment for Alzheimer’s will be found someday — that President Obama signed the National Alzheimer’s Project Act into law earlier this year. The legislation will create a coordinated national plan to overcome the Alzheimer’s “crisis.” (Congress also is debating the Health Outcomes, Planning and Education for Alzheimer’s Act, which would improve diagnosis, care planning and medical record documentation.)

On the state level, the Iowa Legislature passed and Gov. Terry Branstad recently signed House File 390, the Alzheimer’s Disease Response Strategy Act. The law requires the Iowa Department of Public Health to convene a work group to design a strategy for responding to the needs of Iowans with Alzheimer’s disease and other dementias. The work group will make a recommendation about how best to create an office in state government specifically focused on addressing the disease and its aftermath.

We think such state and national legislation are good steps forward, and we hope the increased focus on coordination and public policy solutions will help improve the quality of life for families such as the Murrays.

But history hasn’t shown much cause for optimism. The funding for Alzheimer’s research pales in comparison to the funding for cancer, HIV/AIDS and other diseases. And national and state task forces have been organized and have offered recommendations before. (Part of the new state work group’s responsibilities, for example, includes reviewing all the recommendations offered to the governor in Legislature a mere three years ago by the Alzheimer’s Disease Task Force.)

As scientists continue to search for a means of treatment and early detection — and ultimately a cure — our state and nation need to focus on expanding the care and support options available to the growing number of families struggling through these difficult and emotionally-fraught choices.

If your family is beginning to ask questions about how best to care for someone you love, contact the Alzheimer’s Association of Eastern Iowa at www.alz.org/eci or 319-294-9699 or Elder Services at www.elderservicesinc.com or 319-338-0515.


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