Living with frailty – Independence and control

In the third in a series of blogs on the experience of living with frailty, we discuss research findings on how people manage everyday tasks and their desire to retain independence and control.

In a previous blog, we wrote about how older people typically rejected the word “frailty” and how the people we spoke to would more readily talk about death and dying than the prospect of becoming frail.

At the heart of this was a fear older people had about losing independence and control over their lives.

This was summed up neatly by one participant who said she didn’t want to use a wheelchair; that she didn’t like the idea of being “pushed out, in front of the neighbours”.

It was seen as signifying that she was “getting old” and she wasn’t ready for that.

STRIKing THE RIGHT BALANCE

There was an important balance to be struck here. It fell between getting outside and maintaining a healthy level of engagement with the local community and friends and being able to maintain control in their own home.

Sitting in front of the television for long periods could be seen as a limited lifestyle. However, in the context of someone who may not feel steady on their feet or confident being around other people, it may seem an entirely logical way of maintaining control in a safe environment.

The challenge is that the long-term physical and mental health impact of such a lifestyle could be extremely negative, both for individuals and their carers.

This underpins a key finding from this research. Older people living with frailty often find they need to be in a constant state of negotiation with factors relating to their lifestyle, living space and care needs. This can often be unconscious.

FINDING A WAY THROUGH ONE’S CHANGING NEEDS

Living with frailty can mean people have very unpredictable needs and can be prone to sudden changes or rapid deterioration. This can sometimes be temporary, but, without the right support, they can be long-term changes.

People can equally have periods where their health and wellbeing is very stable. They could be dealing with reduced mobility and muscle strength but are otherwise well. In every case, this isn’t a neat and universal process – it will affect people in very different ways.

Finding a way through these changing needs is crucial to maintaining independence for as long as possible. For one participant, this meant moving into sheltered housing.

“I must be lucky: I’ve got a lovely home. One kitchen, living room, a shower, one bedroom; it’s lovely. And if I need anything, I just call.”

Another participant couldn’t imagine leaving their home, even though they were confined to living on the ground floor. The impact of moving away from somewhere with treasured memories and emotional support from friends and neighbours must not be underestimated.

PLANNING DECISIONS AHEAD OF TIME IS CRUCIAL

Making these decisions in a planned way, not at the point of crisis, is crucial. It is too often the case that moves to care homes or sheltered housing take place after an emergency admission to hospital, when there is little sense of transition or adjustment.

Another participant found that they were struggling to deal with money: on one occasion giving £40 to a shop assistant when they only needed 40p.

His family started to help with his money, with his agreement, and it allowed him to carry on doing the things he’s always done while, in some respects, ceding a degree of independence.

This doesn’t mean that society defaults to removing elements of control from older people’s lives. The majority of people need very little, if any support.

However, in this process of negotiation, older people living with frailty should reflect on their changing needs and where necessary find ways to maintain control over the things that are important to them.

Health and care services must equally respect and support this. Striking the balance between support and self-determination should be the bedrock of care planning.

Next time we will look at support and assets.

Age UK set out to better understand the lived experience of people living with frailty. We worked with Ipsos MORI in spending time with older people to hear and see the challenges they face and what in their lives was most important to them. You can read the full report including powerful interviews with the people that took part. Read the introduction to this series of blogs

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