Who we think we are: the role of identity in making decisions as we get older

What identity means

The panel described identity as having two sides. The internal self is how you see yourself: your values, your traits and the story you tell about who you are. The external self is the roles you play, the places you spend time in, and the people and groups you feel part of.

Self-verification theory, first described in the 1980s, holds that people want others to see them the way they see themselves. Later life puts this under pressure. The roles and markers that back up a person’s sense of self change or fall away, from retirement through to receiving care at home or moving into residential care.

Identity also keeps shifting as bodies, thinking and memory change, and as roles change at work, in the family and in the community. Two people of the same age with the same health conditions can feel very differently about where they are. One may feel old and pushed aside by society, and the other may not.

The panel saw identity as a way to extend person-centred care, by looking at people’s identity needs alongside their psychological needs.

When care ignores who someone is

When care takes no account of who someone is, people are more likely to resist or push back against the change being asked of them, and less likely to keep it up. Fair care and fair outcomes also become harder to reach.

People are more willing to act on advice when they feel seen and understood, even if the advice is the same. In a memory clinic, this can mean starting the appointment with the person: what life is like now, what they have done, what they enjoy. Symptoms often come up on their own. Advice can then be framed around that life. A scan or a tablet might help someone stay at home and keep tending their garden. Giving up a driver’s licence, a big part of identity for many people, is easier to talk about once there are other ways to get around.

From there, the job is to lay out the ways the story could go and help the person towards the ones they prefer.

Why identity gets overlooked

Identity can be hard to see and can sound abstract. It still has a long research history. Social psychology has studied it since the 1960s, including the idea of a health identity.

Health care, like finance, tends to take a rational approach built on information, processes and optimisation. Behavioural science points to less visible influences on behaviour, such as emotion and identity. In medication adherence, where decades of work have made little difference, recent research and an international conference have both named identity as a missed opportunity. Services may also not be asking the right questions, making time to get to know people, or have the tools to do it well.

From one clinic to a whole system

Good clinicians often work with identity one to one, by training or by instinct. The harder task is to build it into the systems of a sector like aged care. It can be done. Pilot programs in Australian pharmacies found that more conversation and goal setting with a pharmacist improved how well people took their medicines.

The benefits rarely show up straight away as a health outcome or a saving. With an ageing population and fewer staff, prevention will be needed more and more. The panel suggested that even an indicative economic analysis could help get identity-based approaches funded.

Providers need to change too. Many home care clients and aged care residents have detailed life stories on file that nobody reads.

With different workers coming and going, the challenge is to pass on enough of a person’s story for each new worker to know them, without the person having to tell it again and again.

Ageing in place

Ageing in place is usually described as staying independent at home for longer, and it can look like the gentler option. A move into residential care changes everything at once. At home, change comes slowly, surrounded by everything that tells you who you are. Aids appear in the bathroom. Strangers start coming to the door.

Relationships change too. When a son or daughter becomes a carer, a catch-up over a cup of tea can turn into questions about medication, and the balance of power shifts. The older person can lose roles quickly. Someone else walks the dog, cooks in their kitchen and makes the tea when family visit.

Few people are ready for this. Family members didn’t expect to become carers, and the older person didn’t expect to become dependent. The panel asked whether lost roles are being replaced. A parent who has always provided for others may not be able to do the same things now, but there may be other ways for them to fill that role, worked out with them as things change.

Intergenerational care, then and now

Many diverse communities have strong traditions of intergenerational care. The panel described a kind of time capsule among people who migrated decades ago. They remember family life from the 1950s to the 1980s, or in the old country, and expect it to carry on. Families may be asked to promise they will never put a parent in a nursing home.

Those memories come from large families living close together, at a time when people lived with less frailty and disability and died younger. Today families are smaller, most adult children work, and people need far more help than they have ever seen. Family members who can’t keep the promise can carry a lot of guilt.

Providers can be left wondering why help keeps being turned down. Underneath there is often a slow grief, as a stranger in the house becomes a sign that abilities are slipping away. This is rarely talked through with the person. The panel suggested treating it as a negotiation, where accepting some help gives the person a chance to co-author the best version of what comes next.

Family carers

Of older Australians who get help in the community, about 80% get it from unpaid carers, and women make up 72% of primary carers.

Care tends to fall to wives, daughters and nieces, by family decision or by default. Sons may have few role models for caring for a parent. Men caring for their partners can feel shame or guilt about asking for help, and often have no network around them.

When a daughter becomes her mother’s carer, both may be grieving the change in their relationship, while there is practical work to organise, coordinate and schedule. The panel compared it to arranging a funeral.

There is no set process for these conversations. Many families barely discuss wills or the end of life, and the change often arrives as a shock.

Seeking help and taking medicines

People are often slow to seek help, and about half of people with long-term conditions don’t take their medicines as prescribed. Behaviour ID works from the principle that “people don’t resist change, they resist being changed.” It matters who is asking, and whether the person has chosen the change as part of their own story.

In work for BESTMED, an Australian medication management company, Behaviour ID found that a medicine can feel like a threat to identity.

The threat is sharper for people who have always seen themselves as strong, or as providers for others. One sign of it is white coat adherence, where people take their medicines only in the lead-up to a blood test or an appointment.

The messenger matters as well. One panellist has been trying to get his father onto an e-bike, which could keep him riding. His father sees it as a threat to the person he has always been, and the suggestion comes from his son, a younger version of himself. His daughter is now having the conversation instead. He hasn’t come round yet.

Framing can also shift a decision. A man with heart failure refused medicines that would ease his symptoms and lower his risk of dying or going back to hospital. He said they made him feel like a zombie. One of them was making him dizzy, and there were other options. Without treatment, the heart failure would make him feel like a zombie within months, and if a new medicine had the same effect, he could stop it. That was enough for him to agree.

Delays in dementia diagnosis

A dementia diagnosis often takes a long time. In early Alzheimer’s disease, it is often family and friends who notice the changes and seek help. The disease can take away a person’s ability to see their own symptoms. They believe they are fine, and it isn’t denial. Other people notice the changes but put them down to normal ageing.

Then there is fear, often in people who watched a parent live with dementia. That fear keeps many people from seeking help. If anything can be done to slow these conditions, it is at the very early stage.

Culture is more than a preference

Culture is often treated as a set of preferences, such as familiar food or a language. The panel saw it as broader and more personal. It includes the groups people identify with, whether they take part in person or simply feel part of them. Those groups give a sense of security and belonging, and some certainty that things aren’t changing faster than a person is ready for.

Research known as the social cure has found that people who keep more of their group memberships tend to have better health as they get older.

Food came up again at the end of the session, with an example from a care facility in Hong Kong. It has retirement living and higher-care floors in the same building, with a restaurant on the ground floor. The restaurant serves texture-modified meals for people who have trouble swallowing. Residents can come down, in a wheelchair if need be, and eat dumplings with their family that still look like dumplings. Some of this already happens in Australia, and one panellist would like to see more of it, with older people part of everyday life instead of kept apart in their rooms or in care facilities.

Keeping a person’s story with them

Assessments are often out of date by the time they are used. When an older person moves into respite care for a few weeks, staff may be working from an old medication chart or an assessment done years earlier. Some people in this group do very badly. Their needs have changed, and something as significant as dementia can go unrecognised.

One research trial paired a two-page summary for the new GP with a short video of the person at home, showing what they can do and a family member talking about what matters to them. The panel saw a role for artificial intelligence and apps in doing this at scale, as long as it stays accurate and doesn’t add too much work.

The sector talks about continuity of care. The panel also raised continuity of identity: how a person’s story is captured, shared between services and kept up to date. A few brief notes on file are not enough.

Culturally safe care, day to day

The new Aged Care Act treats culturally safe care as a mark of quality. On the ground, much of it is practical. Does the person need an interpreter? Too often a family member speaks for them and they are left out of the conversation, even though using an interpreter is a standard of care.

It also means understanding how decisions are made. Some people want to be spoken to directly. In other cultures, decisions are made by the family. With First Nations people, it is important to take the time to engage in a way that suits the person and their family, and to understand their story with health services. If you don’t know, ask.

Ageing Reframed sees culturally safe care as part of good care for everyone. The term CALD (culturally and linguistically diverse) is often used as if it described one uniform group, and working with CALD communities has often meant translation and little else. Behaviour ID starts with what people do, believe and need, and then looks at how that maps onto cultural and linguistic groups.