We all talk about living well with dementia – in other words, having as good a life as possible. But what is life without risk?
Risk is not a hazard or danger in itself, but the chance of it actually occurring and the severity of any likely adverse effect. In other words, what is the worst that could happen and what are the chances of it actually happening?
Why risk is important
One of the biggest barriers to enabling people with dementia to have more control over their lives is an overly cautious approach to risk, argues the Department of Health 2010 Nothing Ventured, Nothing Gained: Risk guidance for people with dementia.
And the progressive nature of dementia makes it all the more important that individuals retain control for as long as possible and to make the most of chances to do things they enjoy, even if these carry a risk.
“There may only be the one opportunity for them to undertake a much missed familiar activity or to take the chance of trying something new,” says the guidance. And enabling ‘positive risk taking’ in such situations can help build up trust and relationships between the individual, family carers and health and care practitioners.
What Nothing Ventured aims to do is help anyone supporting someone with dementia “take a proportionate, measured and enabling approach to risk”, recognising and building on the abilities they still have.
Being overprotective towards someone with dementia can damage relationships and cause distress. One man quoted in Nothing Ventured says there is a difference between carers and ‘keepers’, who “try and assume total responsibility for your life prematurely”.
Another personal account is adamant that “while we can, we must challenge the risks … People living with dementia must be allowed to take risks, because if we don’t, we are in danger of relaxing into the disease”. Taking risks can be a weapon against the hopelessness they may feel, and it’s important to offer reassurance if it becomes necessary for someone to give up part of their independence, like driving.
Attitudes to risk
Everyone has different perceptions of risk based on their individual character, upbringing, past events and so on.
As Nothing Ventured points out: “While there is a ‘core’ of situations that are likely to apply to most people with dementia, for instance, deciding about driving, managing money, going out or being left alone independently, others might be more unusual; for example, being able to continue taking part in extreme sports.”
So it’s important not to make assumptions based on personal fears and worries, although, in its position statement on ‘safer walking technology’, Alzheimer’s Society acknowledges that carer concerns, and a wish to protect the person with dementia, are understandable.
“As the symptoms of dementia develop, many carers fear that the person they care for will get lost and become distressed and vulnerable or exposed to danger. Anxiety that someone may get lost can contribute to the decision of carers that they can no longer manage to look after the person at home. It may also mean the carer locks the person into the house, thereby restricting their freedom.”
In addition to varying attitudes to risk, people experience dementia differently. For instance, if the main worry is about leaving the person on their own, things to consider might include how they react to stress, whether they recognise dangerous situations and if they know how to get help in an emergency.
The type of dementia and its progression come into the equation. Nothing Ventured flags up times when some risks increase, or decision-making may be harder or more complicated, and things need to be reviewed:
· Diagnosis of dementia or realisation of what it means – likely to be very emotional time, affecting the person’s normal behaviour and thinking, including their judgement of risk situations
· Changes in behaviour due to the dementia itself or other health problems, or perhaps a change in support or accommodation
· A decline in physical or mental health that leads to a change in ability
· Increasing levels of disability, such as loss of hearing or sight, which affect the person’s ability to manage risk.
Another challenging time may be at the ‘in between’ stage when the capacity of the person with dementia to make decisions fluctuates, but is not considered to be absent altogether.
Interestingly, a study quoted in Nothing Ventured found that a group of people with dementia researchers spoke to did not use the word ‘risk’, although they did refer to frustrations caused by memory problems. They also developed their own strategies to cope with the changes they experienced, like giving up certain activities they felt they could no longer do.
Stopping driving is a prime example of individuals ‘self-regulating’ risk. As Alzheimer’s Society points out in its factsheet on driving, most people with dementia stop driving within three years after the first signs of the disease, generally choosing to do so because they begin to find it stressful or they lose confidence.
It is all about context and finding appropriate solutions. The Social Care Institute for Excellence (SCIE) points out: “Simply having a diagnosis of dementia doesn’t mean that people can’t cross the road safely – some people can and others can’t. And just because a person has had one fall, it doesn’t necessarily mean that they are likely to fall again, particularly if there was a specific reason that has now been resolved.”
Nothing Venturedoffers the example of a man with dementia who got lost quite frequently, but this was less of a concern because many people locally knew him and where he lived; what might be seen as more of a risk was him going into care in an unfamiliar setting far from family and friends.
There is usually a reason when a person with dementia starts to walk about (especially away from home), although it may not be obvious. Maybe they’re bored or frustrated, they just enjoy walking, it uses pent-up energy or relieves pain or discomfort, they’re confused about time or by a new environment. Knowing their purpose makes it easier to agree a solution.
Getting the balance right
‘Risk enablement ’ and ‘positive risk-taking’ involve a balancing act. What they should not be is a failure to recognise risk or give enough thought to a person-centred strategy for managing a specific situation.
How much is a particular activity likely to contribute to – or take away – a person’s quality of life, independence and dignity? Are there certain circumstances in which the individual is more vulnerable? Is there a difference between perceived and actual risk? What level of risk is acceptable to the person with dementia and their family?
The better you know the person and what’s important to them, the easier it is to weigh up risk against the value of an activity in their life and identify areas of their life where positive risk-taking can help produce the results they want.
Nothing Ventured comments: “Discussions with people with dementia that are based on the skills they have retained and the ‘ways they get round problems’ are likely to be more effective than using terms that might be perceived negatively, such as being ‘unsafe’ or ‘at risk’.”
Analysis of risk and agreement on suitable strategies also needs to take account any potential harm to others, including family carers whose own health might suffer if they do not have opportunities to take a break from care, for instance.
The use of technology frequently crops up in discussion about risk management, particularly whether it is intrusive, restrictive and more for the carer’s benefit than the individual’s.
The AT Dementia website quotes the 1999 Royal Commission on Long Term Care definition of ‘assistive technology’ – “any device or system that allows an individual to perform a task that they would otherwise be unable to do, or increases the ease and safety with which the task can be performed”. It’s about living well by compensating for some of the difficulties experienced by people with dementia; safety is just part of that.
It takes time to find the right solution for each individual that can, ideally, be integrated into their normal routine. Strategies involving technology require careful thought. In its statement on safer walking, for instance, Alzheimer’s Society says that people with dementia have particular concerns about deception such as hiding an electronic device in their clothing or not telling them its true purpose. Some people might even find that the very presence of assistive devices reminds them about their memory problems, which can cause distress.
Alzheimer's Society believes that technology is particularly suitable for people with dementia in the early and moderate stages, when it can support independence, enable a person to take informed risks and consent can be given. In the later stages people with dementia may be more vulnerable and require interventions that provide a more immediate solution.
Even everyday devices, like mobile phones with important numbers on speed dial, should be reviewed as part of risk analysis. Smoke alarms are a good idea, but too many – or putting them where they may be set of unnecessarily, like the kitchen or bathroom – could cause a lot of disorientating noise and confusion, and actually hinder rather than help a person with dementia in an emergency.
Planning for risk
Nothing Ventured suggests a regularly reviewed risk enablement plan, forming part of the individual’s care or support plan, should summarise the risks and benefits that need to be balanced, the likelihood and possible seriousness of each risk, actions taken to promote positive risk management and strategies for addressing risks should they occur.
The plan might cover particular aspects of everyday living such as smoking, cooking, managing money and going out. Advance directives can help accommodate an individual’s wishes when they lack capacity to give consent.
Care workers, family carers and the individual need to try to reach a shared understanding, so the person with dementia knows why they are worried and they have a clearer idea of what the individual does or does not see as a risk in relation to the things they want to do. It’s also important to explore whether the person recognises the effects of dementia on them.