Caregivers as bad advocates

Howard Gleckman has an interesting post wondering why the 40-60 Million caregivers (those providing informal, unpaid care to loved ones dealing with disability) are such bad advocates, especially the subset that are caring for the elderly (most typically their parents). Howard discusses his participation in a recent caregiving forum, and upon reflection notes the following as the biggest barrier to effective advocacy on behalf of caregivers:

It is different for those caring for elderly parents or spouses. They often have no network of support. They have no free time. And their caregiving experience is often time-limited. It may last a few months or a few years. Rarely, it will last five years or more.

Most important, it ends with death. Every time. And when it is over, caregivers often want to put the experience behind them. The last thing most want to do is relive it for some politician.

People my age and younger will be more affected by caregiving for our parents than any generation(s) before us, simply because there are fewer of us per parent. The fact that a large number of persons cycle predictably into this role and are affected by it, but there is little response to it strikes me as a learning problem of sorts. You may only do it once, but others will follow. It is unclear how to change this, but it is just as crucial to figure out how we will informally care for the baby boomers as it is to figure out how we will finance their Medicare.

An exchange with Austin last night helps to illustrate the learning model problem of improving how we care for loved ones (once you are finished with that phase of life, you seem to move on and forget about it). He read a draft of this post and sent me a link to this post he wrote nearly two years ago about day care/child care/pre-school costs–both explicit money flows as well as hassle, anxiety and worry. My kids are now 11, 14 and 16, so the difficulty of the phase of life that he writes about had faded vaguely away for me, and with my memory, any impetus for organization and action that I may have had. He tweeted last night that he doesn’t even think about these issues less than two years later. Interesting parallels.

DT

About Don Taylor
Professor of Public Policy at Duke University (with appointments in Business, Nursing, Community and Family Medicine, and the Duke Clinical Research Institute). I am one of the founding faculty of the Margolis Center for Health Policy, and currently serve as Chair of Duke's University Priorities Committee (UPC). My research focuses on improving care for persons who are dying, and I am co-PI of a CMMI award in Community Based Palliative Care. I teach both undergrads and grad students at Duke. On twitter @donaldhtaylorjr

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