lost at seaDo your patients get the most out of the internet when it comes to caring for themselves? Let’s talk about how YOU can direct them to useful websites so they don’t get swallowed in a Google of information.

Working with patients to engage in self-management of their chronic illness is one of the biggest challenges to health care providers today. Those patients who self-educate and work toward self-management have better outcomes and more control over the symptoms of their chronic illnesses, but the question remains, “How do you get a patient to educate themselves and be more knowledgeable about their illness?” In the last decade, the Internet has provided powerful tools for patients to engage in self-management and this blog post will highlight just a few user-friendly sites toward which you may direct your patients. If you can direct a patient to a specific site, they may feel less overwhelmed and more inclined to research on their own.

Below I describe two sites (one disease-specific and one for overall health) that are filled with current and reputable material.

Chronic Obstructive Pulmonary Disease (or COPD) affects 6.3% of the United States population. A set of resources, provided by the COPD Foundation (http://www.copdfoundation.org), is available now for you to give your patients. If you have patients who prefer to read, watch, or interact with health education materials, the COPD Foundation has provided material in each way. For example, do you have patients who respond to being given paper in their hand to read? Try printing and handing out the Slim Skinny Reference Guide (http://www.copdfoundation.org/Learn-More/Educational-Materials/Downloads.aspx#SSRG), available in ten languages, to address ten of the most popular topics in COPD care such as, medicines, oxygen therapy, and exercise.  Do you have patients waiting in a room where you can show videos? Try giving them the option to view videos (http://www.copdfoundation.org/Learn-More/For-Patients-Caregivers/Educational-Video-Series.aspx) to educate themselves about COPD with lung illustrations and explanations of the limitations that come with the illness. One of the keys to patient engagement includes leading them to interesting and easy-to-use resources. The COPD Foundation provides resources that are visually appealing and patient-centered.

Another useful site for self-management of disease is provided free of charge, in many languages, and in many modes (i.e. print and video) by the US government. This website is called MedlinePlus (http://www.nlm.nih.gov/medlineplus). In the center of the home page is a tab titled “seniors,” where you can direct your patients to self-educate on popular topics such as Alzheimer’s Disease, Arthritis, Exercise for Seniors, Medicare, Medicare Prescription Drug Coverage, Nutrition for Seniors, and Skin Aging. Click on “Skin Aging,” for example, and a “Start Here” button appears beneath the introduction as a good starting point for a patient. Or, scroll to the bottom for a list of patient handouts available in English and Spanish. MedlinePlus provides videos, interactive tools, and handouts in multiple languages and for many age groups including seniors.

The world wide web is a giant sea of information that can be vetted by health care providers and passed on to patients to help them engage in self-management of their illness.

What are some of your favorite websites to direct patients?

Please share them and discuss below under Comments or join us online for our Weekly Discussion on Aging (http://slurl.com/secondlife/UTMB%20Island%20Alpha/143/227/26).

Our guest blogger this week is Meredith Masel, PhD, MSW. She is at the Oliver Center for Patient Safety & Quality Healthcare.

Image Source: http://jackbrummet.blogspot.com/2012/01/poem-lost-at-sea.html

When I think of multigenerational families, what comes to mind is the image of Big Daddy and his family from Tennessee Williams’ play Cat on a Hot Tin Roof. Now not all multigenerational families are dysfunctional (ignoring images from All in the Family now). It used to be very common in the US. In many cultures, other than the US, multigenerational families are the norm. I am reminded of homes I visited in Kuwait that were huge with many living areas for several generations of family members.

Big Daddy and his extended family

It seems to be there are three options in the US for living quarters as we age.

  • Live alone or with a spouse, sibling or a friend/peer.
  • Live with relatives from another generation.
  • Live in some form of institution, nursing home, assisted living, whatever but a place that has paid staff to help out. Options 1 and 2 can be augmented by paid staff too but let’s just focus on location not arrangements.

The trend has been to avoid institutional living until that’s the only option. However, are people choosing multigenerational settings over living alone?  Philip Cohen, professor of sociology at the University of North Carolina, said, “We’ve seen for a long time that people tend to live in multi-generational households when they don’t have as much choice as they’d like. So it seems like Americans, when they can afford to, don’t do this. So when we see a strong uptick in multi-generational living, we have to expect that it’s economic. Although frankly, the numbers have been trending up since the middle of the decade. … Well the long term decline in multi-generational living made us think that it would never turn around. The steep increase in the last few years has us wondering. I don’t know.” (Marketplace Morning Report. Multigenerational Home Numbers on the Rise. Published: August 30, 2011.)

Certainly, the institutional option has it’s risks and the trend to keep disabled people in their homes while providing home-based services has it’s downside as well. Commenting on the quality of New York’s record in providing long-term care for its residents, an editorial stated, “The state ranked 44th in the percentage of high-risk nursing home patients who develop bed sores, which is often a measure of neglectful care. It ranked 50th in the percentage of home health patients and 28th in the percentage of nursing home patients who were sent to the hospital [another indicator]. … It also ranked 50th in the percentage of disabled adults living in the community who always or usually get the support they need. This is an ominous statistic given the drive to move larger numbers of people out of institutions and into community-based care.” (New York Times Editorial. Bad Grades on Long-Term Care. Published: September 12, 2011. Note: sometimes this link takes one to a log in page – I do not know why or the solution.)

In reviewing blogs discussing the ins and outs of maintaining multigenerational homes, many of the posts dealt with healthy participants. One post did comment on the converse.  This is from Rockville Mama, “Parents eventually get old and frail and sick. Then what? There’s no ’sharing’: you look after them like they looked after you when you were little, it is really hard and there’s very few options for help for people in this situation in this country. You should talk to people (especially women) who have had to quit jobs to be able to look after both their kids and their sick parent/s. So the issue is not just how to I manage the ’space’, the chores and the personal conflicts. I do think though, despite all the challenges, this is the best system there is for people of all age to have a supportive family life. It requires a lot of give and take: which it seems like people now simply do not want to be bothered with.”  (New Your Times. Tips for Multigenerational Households. Posted: December 8, 2008)

Is Aging a Disease? 

By Rodger Marion

We are born and after awhile we die. We all die. All that varies is the time span between birth and death. No one actually dies from old age. We die from various accidents or pathologies. Then, what are the benefits of increasing the lifespan?

David Gems, in the referenced article below, defines some useful terms to begin our discussion. If we do not die from old age, what do we call it. Gems says, “… biologists use the term ‘senescence’ for the increasing frailty and risk of disease and death that come with aging.” And he calls increasing the lifespan “decelerated aging” and he’s all for it. So am I, in general, but the deeper questions might be: is senescence a disease and why is living longer a good thing?

On the disease question, Gems says, “Consequently, populations accumulate mutations that exert harmful effects in late life, and the sum of these effects is aging. Here evolutionary biology delivers a grim message about the human condition: Aging is essentially a multifactor genetic disease. It differs from other genetic diseases only in that we all inherit it. This universality does not mean that aging is not a disease. Instead, it is a special sort of disease.

Well all that sounds like dancing around the issue but it appears that as we get older things change and our odds go up that we develop something terminal.

OK, so what about the prospect of putting off the inevitable for awhile? Gems says, “It is possible to slow aging in laboratory animals. In fact, it is easy.” He goes on to explain how the life span of nematode worms can be extended tenfold through a simple gene alteration. This logic probably extends to humans as well, but Gems says, “One theory attributes [aging] to an accumulation of molecular damage. Another points to excess biosynthesis … Yet the truth remains unclear.”

So there is a genetic solution in there someplace. Further, Gems encourages a holistic approach to wellness and treatment. He says, “One scientist studies heart disease, another Alzheimer’s disease, another macular degeneration and so on. Yet such ailments are symptoms of a larger underlying syndrome: aging. It is for this reason that there is a law of diminishing returns when it comes to treating diseases of aging. The battle with aging is akin to that between Heracles, the hero of Greek mythology, and the multiheaded Hydra. Each time Heracles hacked off a head, two more would sprout in its place.”

He concludes, “Yet in the long run a more powerful way to protect against age-related disease would be to intervene in the aging process itself. This would provide protection against the full spectrum of age-related illnesses. Returning to our classical illustration, to really defeat the  diseases of late life we need to strike at the heart of the Hydra of senescence: the aging process itself.”

Back to why live longer? Gems ponders the issue but I concluded he was inconclusive. I want to leave the question open for you all to explore. So, here is your assignment: What’s your take on the value of decelerated aging?

Reference:

Gems, David. Aging: To Treat, or Not to Treat? American Scientist, July-August 2011. http://www.americanscientist.org/issues/pub/2011/4/aging-to-treat-or-not-to-treat

Image from American Scientist: http://tinyurl.com/3v9gudt