Declaration of independence

What do older people mean by “independence”? What helps promote
independence, and how far do services help older people remain
independent? These questions are at the heart of a new study by the
Audit Commission in partnership with the Better Government for
Older People network.

The study found that for some older people independence did not
mean doing everything yourself; indeed, many received substantial
amounts of help from friends, relatives or services. Rather,
independence was defined in terms of choice and control. One
respondent summed up the views of many when she said: “The
important thing is to feel in control of organising your support.”
Another said: “Being able to make choices about what I do in my
life and when I do it”, and “having control over your life, making
the decisions you want to make”.

Independence also meant avoiding feeling a burden, particularly to
children busy with jobs and families of their own. Moving into
sheltered housing could feel at first like losing independence.
However, the security actually enhanced the feeling of being in
control, particularly for older people who had previously lived in
areas with high levels of crime that had made them feel vulnerable.
Moreover in sheltered housing, help was readily available rather
than having to be specially requested – “You can feel safe and you
only have to ask for something and it will be done…”, was one
comment from an older person.

Threats to independence included bereavement; deteriorating health;
giving up a car (particularly for men); and poverty. Some people
were financially dependent on their children, with one saying: “No
matter how independent a person is, they always have to fall back
on their children when they are getting a pension because the
pension is not enough for two people to live comfortably.”

Age often incurred new costs, as many people had to pay for small
maintenance jobs around the home and garden. “I used to be able to
put my hand to anything,” one respondent said, “but past a certain
age you can’t”. Even in sheltered housing, residents needed to pay
for small tasks like putting up a curtain rail. Again, this could
mean feeling vulnerable; older people wanted a list of reputable
workmen who wouldn’t “rip them off”. “In a village you know people
but in the cityÉ people just come up the drive and say you
need things done.”

Staying independent also incurred extra spending. Several focus
group members could not afford a call alarm: “I fell in my garden
and I called and called but got no answerÉ we have to buy our
own pendants and I couldn’t afford one.” There was widespread
agreement that potentially life-saving services like these should
be free of charge.

Older people felt ill-informed about welfare benefits and the
services available from their local authority. Although some people
felt there had been improvements, information about services was
still not getting through to others. Knowing where or who to ask
was a major hurdle, with people commenting: “Social services will
do things but you don’t know what…”; “Sometimes we hang on the
phone for half an hour; you don’t know who to speak to”. One
participant pointed out that house-bound people could not access
information services, for example at the local library. Others
suggested that the charges paid in sheltered housing should include
information and advice services.

The way information was provided was important. Older people
emphasised the importance of personal contacts in encouraging them
to use new services such as attending a day centre for the first
time, or suggesting how the attendance allowance could be spent.
Help filling in benefit applications was essential. “It’s such a
rigmarole to make a claim, it puts you off”. Some Gujerati-speaking
older people described how specialist advice workers had attended
their day centre and explained about the potential benefits of
services. Personal support of this kind in accessing services did
not seem to be available to most people.

The environment inside and outside the home dramatically reduced
many people’s independence. For instance, inside the home small
pieces of equipment (gadgets for jar lids, accessible kitchen
cupboards), walk-in showers (with space for a care assistant), and
doorways wide enough for a walking frame were important. Lack of
these small design features meant having to rely on other
people.

Outside the home, transport and access to shops and health services
was a widespread problem. Bus routes were inconvenient, stops too
far away and buses difficult to access, particularly in rural areas
where there are no pavements. Taxis were expensive, rarely
available for early morning appointments and some older people felt
vulnerable if taxi drivers did not escort them all the way to the
door. Even accessing health care was difficult: “You have to get
two buses… you don’t get hospital transport if you’re capable of
walking.”

Out-of-town shopping centres meant having to use a car or taxi,
especially when carrying heavy bags. For those still driving their
own cars, parking places (even when reserved for disabled badge
holders) were inadequate: “I have to have the door wide open to get
in and out; cars are getting wider and the spaces are small.” The
loss of a car was a major threat to independence: “When they took
my wheels away I was desolate”.

Although some older people knew of services that delivered shopping
to the home, these ignored the social aspects of shopping, and
rarely included items such as wallpaper or clothing.

There were major gaps between the help that older people needed to
stay independent and what they knew was actually available. Two
particular priorities were identified: first was maintaining social
contacts, within and outside the home: “If I were ill and someone
came in to give me my breakfast and went away and someone came in
to do my lunch and I didn’t see anyone else until they came to do
my tea, I’d be extremely lonely.”

Secondly, there was agreement that little help was available for
people whose problems were not yet severe. They were “between the
set-upsÉ they can’t class themselves as young any more but
don’t want to be dependentÉ” Similar concerns were expressed
about the financial vulnerability of those just above the limit for
means-tested benefits.

The priorities expressed above do not really tie in with current
policies which focus on personal care rather than social contact or
domestic help, and speedy hospital discharge rather than long-term
support. However, part of the National Service Framework for Older
People focuses on promoting physical and mental health. The Audit
Commission is currently investigating local initiatives aimed at
sustaining independence, as defined by older people themselves –
services that sustain and enhance choice and control, whatever the
restrictions of frailty or infirmity.

– The commission is keen to hear about interesting or innovative
work to help older people to live independent lives. Please contact
the project manager Jane Carrier by e-mail: j-carrier@audit-commission.gov.uk    

Caroline Glendinning is professor of social policy at the
University of Manchester and is working with the Audit
Commission/BGOP study. Contact her at
caroline.glendinning@man.ac.uk

The research

To ensure the study was shaped by the views of older people
themselves, focus groups were organised by Age Concern in eight
urban and rural areas across England. Participants were aged 59 to
96. Some were from ethnic minority communities, others lived in
sheltered housing and many had long-term health problems.