As I’ve started looking into caring for my parents from afar, I’ve come across a few nifty sites to help me.

The website for the Family Caregiver Alliance (http://www.caregiver.org/) has a plethora of information, tips and tools to help adult children take care of their parents, whether you live nearby or the children live across the country.

For example, an interesting “trivial pursuit” kind of fact that popped up immediately at the site’s home page was this little tidbit:

Caregiving Fact: The average caregiver is age 46, female, married and working outside the home earning an annual income of $35,000. Although men also provide assistance, female caregivers may spend as much as 50% more time providing care than male caregivers.

Clicking on the hyperlink imbedded in the factoid takes you to a long article that talks about how women do most of the caregiving for elderly persons, whether that person is a parent or an in-law.

In fact, the article says:

Within our complex system of long-term care, women’s caregiving is essential in providing a backbone of support. In fact, the value of the informal care that women provide ranges from $148 billion to $188 billion annually. Women provide the majority of informal care to spouses, parents, parents-in-law, friends and neighbors, and they play many roles while caregiving—hands-on health provider, care manager, friend, companion, surrogate decision-maker and advocate.

Frankly, the article is something of an information packed downer, describing how much caring for a loved one negatively impacts a caregiver’s health, finances, relationships and emotions – depression, for example, is a huge side affect of being a caregiver.

Yet the article offers some hope:

Frequently, support services can make a real difference in the day-to-day lives of caregivers. Research has shown, for example, that counseling and support groups, in combination with respite and other services, have positive direct effects on health behavior practices and assist caregivers in remaining in their caregiving role longer, with less stress and greater satisfaction. In fact, women are more than twice as likely as men to say that they would benefit from talking to someone about their caregiving experience. Further, some studies have shown that actual linkages to services in lieu of information-only programs are more beneficial to caregivers. Because women’s labor force participation continues to grow, employer-sponsored programs will become an increasingly vital resource for women who both work and provide care to a loved one.

The above doesn’t surprise me, of course. I can see the toll taking care of my dad – even the minimal amount of care needed at this time – is taking on my mother.

What this tells me is that I must get my mother to take advantage of the support and counseling services available to her in her city. It’s a priority on my to-do list before I head out to Pennsylvania.

Wish me luck – my mother is of the opinion that only “weaklings” go to counselors or vent in support groups. Getting her to do what can help her is going to take some doing.

Big doings afoot in the personal health record arena.

The following is an interesting comment by Miles Hochstein, Program Director Omnimedix Institute in reply:

Jean,
I enjoyed perusing your PHR blog, since it’s a about topic that is very much on our minds here at Omnimedix Institute. I invite you to learn more about the independent nonprofit institute (Omnimedix Institute) that is developing, deploying and operating Dossia here, http://omnimedix.org/dossia.html and to read about our commitment to the same principles that you eloquently describe: http://omnimedix.org/phrbasics_article1.html

In addition some more specific answers to consumer concerns are provided at the Dossia web site here: http://dossia.org/overview.html and here: http://dossia.org/faq.html

I strongly agree with you on the importance of data being held by a neutral third party, and the entire Dossia effort is in fact founded on a separation between the employer funders and the ownership of the data. We at Omnimedix are totally committed to privacy as a consumer right and as the basic foundation for the successful adoption of Personal Health Records. In funding this project, the Dossia Founders group have endorsed these ideas as well. It is because we share your privacy concerns that we have designed the Dossia system in the manner described above, as a secure and independent infrastructure to support true personal health records, controlled by the individual, institutionally independent of the employer, protected by financial level security systems (for example, never stored entirely in a single location, but rather in a federated data base), a record that will follow the person for life. There are many important details to discuss in how this vision will be realized but I believe that we at Omnimedix share your perspective. I also would say that to my knowledge the Omnimedix Institute / Dossia project is the only PHR project now nearing deployment that meets the standards for institutional independence, data control, privacy and consumer rights that you describe.

We’re doing things differently, and we are optimistic that by doing the right thing we will bring the power of PHRs to many more people than have them today. Thanks for creating a blog about PHR issues. I look forward to reading your blog again.

Miles Hochstein Program Director Omnimedix Institute