Home | Opinion | Does anyone really know what a good frail life looks like?

Does anyone really know what a good frail life looks like?

There have always been three big age-stages in our lives – marked by turning 21, 40 and 65 (the key to the door, life begins at, the gold watch). So, as we live longer is a fourth turning up or do we just head off to aged care? There is… turning 81.

Most of us will cruise through the 65 to 81 age-stage – less about retirement these days, and more about editing our lives for more happiness and new purposes, even if the finances are a bit tight and the body’s wearing out.

Then we turn 81 and there’s no escaping the current narrative. We’ll have multiple chronic conditions. We’ll become clients of aged care (81 is the average age of entry to residential care, retirement villages and home care). We’ll cop all kinds of ageist attitudes and directives (that society sees as OK because of all the things they’ve been getting away with in your last age-stage). We might even die (its roughly the life expectancy of Australians). No wonder we’re battening down the hatches, downsizing and ageing in place.

But what else should we know about turning 81, and why is it so hard to find out?

We talked to lots of 81-year olds and discovered a very different narrative. They had fun in their 70s, designing with their mates a “good frail life” that they want to prepare for and be supported to transition to. Regardless of frailty they expect to maximise this age-stage, they want to keep growing and having things to do, and to keep learning about technology, health and living well. They want a very different aged care that supports them to do this while it cares.

And even if their frailty is severe, they want whatever of this is possible, and not just be “left to die” even if it’s done kindly.

Since this new age-stage doesn’t have a name, and because it’s at risk of being thought of as aged care, we’re calling it “the modern elder” (thanks Chip Conley’s [email protected]). We’ve distilled out from our conversations with modern elders their top 10 tips for being one:

  1. Invest in a commitment to life-long learning and upping your tech skills.
  2. Join an affinity group for 81 year olds.
  3. Edit out what you don’t need, get a new mindset and learn and practice transition skills.
  4. Get a younger mentor and learn to mentor.
  5. Discover the ways 81 year olds are doing real stuff and invent some new roles for yourself.
  6. Invest in your wardrobe, good health and wellbeing.
  7. Talk like a modern elder and resist the downsize chatter.
  8. Get some financial advice so you can pay for your new good life.
  9. Be health literate and act on it, without boring your friends to death.
  10. And only then, find a provider who wants to deliver care on your terms.

These modern elders told us you don’t have to do all of this… but you do have to do some. We’ve been surprised to find how many modern elders aren’t doing any. And even if you’re not into thriving, but still want a good life, you would be wise to do some as protection against the unrelenting societal attack on modern elders: you will get separated from what matters to you. You will get put with lots of people who have lots wrong with them, and then get treated like you’re one of them. You will get made to wait for everything, including your own demise. You will be surrounded by messages and images that that make you believe that you are incapacitated, incompetent and of little value. You will be deprived and neglected, and even abused.

So, the first step to landing good frail lives will need to come from modern elders themselves, then down the track use this collectively to pressure governments and providers to honour their belief in the market providing you with what you want. Our sense is waiting for providers to move first might be a long time coming.

In fact, we asked aged care providers what they used as a definition for a good frail life so that they knew if they were being effective in their work. Generally, they use a combination of demand for their services, quality of the care (not life), numbers of lifestyle programs and client satisfaction/experience surveys. Criteria that rate quite well, win awards and are used with glowing prose and magnificent photos to demonstrate publicly that the mission of the provider has been well met.

Yet a stroll through any residential care facility, a day on the road with a home carer, or even a Meals on Wheels volunteer delivering to modern elders who aren’t clients of aged care suggests that providers might have got it seriously wrong. What we mostly see is very low levels of clients doing, participating, joying, even when ‘care’ is good, staff attentive and buildings grand. We know that research reports high isolation, depression and loneliness regardless of where modern elders live. Modern elders report substantial life-losses that they think are avoidable.

We were surprised that we couldn’t find anywhere a working definition of what a good frail life might be. We wondered who of community, government, providers, modern elders actually know what it is, or are we all being hoodwinked by what we have turned it into.

We extracted out of the top 10 tips for being a modern elder a ‘working definition’ of a good frail life. There needs to be some quality (both in content and amount) about:

  • What you do
  • Who you spend time with
  • Where you live and other places you spend time
  • The messages conveyed about you, and that there is good care and nurturing that sits behind this and renders it possible.

Seems like the sort of criteria we would all use. The right amount of domestic and purposeful activity, leisure and growth. Families, friends, and those who care for and nurture us, people with common interests, co-workers, advocates. Places we love to live in and spend time in. Messages about us that open doors, create opportunity and make us feel good. The right service at the right time. The only difference for frail modern elders is that they want larger amounts of care and nurturing integrated into their good lives, backed by the new breed of compensating technologies.

But when we measured aged care using this working definition it revealed that clients don’t do much, spend most time with people who can’t meet their needs in institutional spaces that abolish roles and are never uplifting, and are surrounded with messages that clearly indicate you are not up to much.

The message for providers is that modern elders don’t want to be extracted out of their lifestyles and familiarities and have it replaced it with The Truman Show. Just give us care that lets our lifestyle continue, they say. Have a look at the six things important to modern elders in the ‘Codesigning Aged Care in Strathalbyn’ report – home not an institution, social connectedness, meaning and purpose, choice and control, valuing people, transitions. Care doesn’t actually rate a mention. It’s not something they aspire to.

For modern elders, care is an important given but sits behind the way they want to live. Modern elders aren’t entirely aligned here with their families who favour good care over good lives – an unfortunate choice that aged care forces them into.

What really surprised us was what we found when we designed services using the working definition for a number of frail modern elders, some with varying degrees of dementia. It actually wasn’t hard to design these services. And they spelt out with surprising clarity where current aged care services are helpful and unhelpful. This would be as good a place as any to start the design of future aged care.

So, what would we have to do so that turning 81 transforms into this ‘modern elder age-stage’ we all want? It’s not that complicated. Imagine (with your friends, family and new affinity group) your good frail life using the working definition. Get yourself ready by having some fun doing the modern elder top 10 tips. Write an advance life directive (ALD) that shapes the life you want to live and sign up your ‘substitute (take no prisoners) lifestyle makers’. Sell your ALD to a savvy provider who wants to get in front of the pack, and send your ALD to the Government so they might finally work out what you want and start procuring for it.

And have a cool 81st.

Mike Rungie specialises in the intersection between good lives and aged care. He is a member of a number of boards and committees including ACFA, Every Age Counts, Global Centre for Modern Ageing and GAP Productive Ageing Committee.

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One comment

  1. The trouble is that we are rarely asked what we older people would like to do, with different ideas explored. There are two restrictions-our physical and mental health and both can be improved with the right assistance, with stimulating activities for the first and appropriate exercises for the second. If our physical condition prevents us from going out then activities need to be brought in.
    Using aged care facilities for activities such as playgroups, singing groups and U3A activities etc enables older people to keep in touch with the community. Buses which many care facilities now have can be used for outings into the wider community, such as joining U3A groups, visits to museums and galleries enables residents to still feel part of life. Imagination is the only restriction.

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