what do you mean, where's the need?

I recently applied for a small amount of funding to support the website I'm building to support adult children who are in turn supporting their aging parents. The point of the site is to recognize and respond to the changing paradigm of aging in the West - no longer are adult children able to look after and support their parents 10, 20, 30 or more hours a week. They can't - they live far away, or they have careers (especially women, which is a big change to a generation ago), or they are raising children at the same time. Or maybe it's all three. They have totally different needs than those well-known "caregivers" for whom caregiving is a significant portion of their day or week. They need information fast. They need it at a distance. They need to be educated on how to even play their role, because they don't know - remember that each person is going through this for the first time. They tell me, often and with resignation, that the existing sources of information and support out there don't make any sense to them. They're fragmented and aimed at that previous generation of caregivers, and "they don't tell me how to solve this specific problem, now, from 500 miles away."

The funder came back with a single, pointed question: How do you know there is a need for this? My slightly bewildered answer was that there are no demographic studies out there about these people. There is no market research about their role in their parents' lives. In the UK, the most recent Census had a tick-box to self-identify as a "carer" (the UK term for what Americans call "caregiver"), but the people I talk to do not think of themselves as "carers", so they wouldn't appear there. The best studies out there on informal care for older people focus on government definitions of "carers"/"caregivers" - 15 or 20 hours per week or more.

My point, which I tried hard to make, was that the whole problem is that nobody is seeing these people as a group with definable needs. Yet they exist, they exist, THEY EXIST. I swear it, and if you ask someone who fits that description they will swear it (possibly in both senses of the word "swear") too.

And they have their own needs. And they make lots of big and small purchasing and life decisions for and with their parents. And they, not the traditional model of caregiving, are the fastest growing group of people who are supporting elderly people in the US and the UK. Do I have hard numbers to back this up? Heck no. But you do the triangulation: Society is aging = more elderly people. People are living longer = more elderly people. Numbers of adult children co-habitating or living less than 1 hour's drive from their elderly people are dropping = fewer steady caregivers for older people. That widening gap between those two factors of demand for informal care (the old folks) and supply of informal care (the adult children) is an entire group of people. They haven't washed their hands of their parents, they are just trying to support and manage from a distance, and while doing a million other things.

Spouses fill some of this need, especially as male mortality improves (leaving fewer female widows), but divorce rates negate some of that, so spouses are not going to fill nearly all of it.

I feel like I'm spending half of my time talking to people, pointing to something large and obvious directly in my field of vision, and their response is usually, "Oh, yeah, I guess I see what you're talking about". But I am not sure that they do. To me, this group has two things tattooed on its collective forehead:

1. NEED
2. OPPORTUNITY

Of course this is essentially the same thing. But I am not just talking about market opportunity. There is a real opportunity here to bring people together around a common experience, and to help them be the best they can at a role they very much want to be good at - supporting their parents in the final quarter of those parents' lives. By bringing them together we not only benefit from collective wisdom, so people don't have to start from scratch every time a parent is diagnosed with Alzheimer's, or left bereaved and isolated at home - we also bring together a group of savvy, smart, and motivated people who are not going to accept the bare minimum for their parents, or for themselves in 20 or 30 years' time. The advocacy and political potential of such a group is great, too.

So, if you have an opinion or insight on this, or if you're one of these people I've described, shoot me an email at jessica AT jessicashortall.com.

Thanks

JS. London.

Time to change the tone

It's exciting - and frustrating - and scary - to find and talk to people whose parents are old. Exciting because they have so much to say, and they naturally identify gaps in what's available to make their jobs easier. These are a new generation of adult children of older people - they are internet savvy, professional, used to advocating for their own health care and rights, busy, and very, very, very, very (did I mention very?) pragmatic.

It's frustrating because they all talk about the same needs and yet no one is meeting them. They want real information that clearly understands their issues and problems. They want it to be intuitive and easy for them to use, but also reliable and very trustworthy. This is their parents we're talking about after all - they are not going to just go with whatever fly by night dog and pony show they come across on Geocities.

Scary, because I'm pretty sure I'm going to have to try to do something, which is always scary. A friend said to me recently, "You sure like to bite off big mouthfuls." Fair enough. I get it. I am exploring a field that is crowded (albeit with, in my opinion, for this group of users, content and offerings that don't "get" them), highly attractive to big players with lots of resources, and fraught with emotion, l

There is so much out there about "caring" (if you're from the UK) and "caregiving" (if you're a Yankee like me), but the tone (not to mention the content) just doesn't work for the people I am talking to. People don't want hugs and pictures of smiling older people. They don't want hearts and logos of a stylized group of people holding hands. They don't want advice about how they should look after themselves, too, and plan ahead, and make lists, and try not to feel guilty. The way they really feel goes something like this:

1. Of course I feel guilty. Why is this even worth talking about?
2. Why would I want to belong to a caregiver support group to continue talking about something that already takes up so much time? When I am not caring for my aging parent, I would like to be
1. Doing my job
2. Taking care of my kids
3. Actually participating in my marriage
4. Drinking wine with friends
   
3. Telling me to find local sources of support for my parent is the most useless advice in the world. I don't even know what questions I should be asking. I have never in my life dealt with social services, so why should I know how to do that now? If I am looking for someone to check in on my Dad, should I be asking social services, the agency on aging, a local charity, a paid helper...?
4. I bloody well know my parent is declining. I don't really need help with seeing that. What I need is specific answers to my specific questions, about my specific situation.
   

Yet the way information and support is structured for these guys goes like this:

1. You probably feel guilty. Let's talk about that.
2. You should join a support group.
3. If your parent lives far away from you, make sure you do the following:
1. Find local sources of support
4. Watch for the following signs you parent is declining...

The gap between these two is amazing. It's as if nobody has asked the question: What is it that would be helpful to you?

I'm trying to ask the question now. If you have an answer, let me know.
JS.