Risk: Assessing, Enabling, Managing 

Risk is part of all our lives and something we often don’t usually think about in the majority of our everyday activities. For the person living with dementia risk becomes something to manage and not eliminate.

This section is taken from the ‘Nothing Ventured, Nothing Gained’ document (www.hyperlinkhere.com ) and provides a structure through which practitioners can assess, enable and manage risk for people living with dementia following admission to hospital.

It has four steps to facilitate safe, person-centred care.

Step One

Understanding the person’s needs

We all have psychosocial needs of varying degrees.

  • Start by thinking how a particular activity (walking for example) is likely to impact on the PLWD’s quality of life. Will it enhance or reduce it?
  • Might the activity be potentially harmful to the person (or others) and so contrary to their best interests if they are not able to make the decision?
  • Thinking about what people need in order to maximise their quality of life provides the context within which people who have the power (or authority) to make decisions can balance positive risks against danger or likelihood of harm.
  • Lowering or eliminating the risks of activities or arrangements that are important to people may reduce some risk but at the potential expense of sense of wellbeing.
  • They may also affect chances of re-enablement or rehabilitation, such as regaining abilities to walk or to go to the toilet independently.

 The table below provides a framework for outlining an individual’s psychological and social needs. 

Step Two

Identifying key risks for the person with dementia

Most everyday activities carry with them some level of risk, but often contain some value to an individual. The challenge for health professionals is to ensure that an assessment of the risk takes account of the value of the activity to the person.

For people living with dementia there are times when some risks increase or decision making may be harder or more complicated. This is particularly so following an admission for an acute event when you and the person’s family/carer should review the situation.

These will differ between individuals but may be:

  1. At the time of admission and not knowing the outcome can be a very emotionally disruptive time and so behaviour and thinking (and therefore risk judgments) may be different from usual.
  2. When there are changes in behaviour – this can arise from change in the nature of the condition and/or another health problem, and therefore a re-assessment of risks might be helpful.
  3. When the health status declines (physical or mental health) might lead to a change in ability and new risks may emerge. This is particularly relevant in the case of an overlying delirium.
  4. When there are increasing levels of disability – alongside possible problems with life and social skills, again prompting a change in the person’s ability to manage risks. A fractured neck of femur requires managed rehabilitation.
Step Three

Assessing the impact of risk

The personal risk portfolio or ‘heat map’ below provides a framework in which to consider each ‘risk’ (behaviour or activity) as a balance between quality of life and risk. There is no scoring system but can be used when discussing the person living with dementia with their family/carers.

As a result, a strategy for mitigating risks and plotting them on the ‘heat’ map can be worked out. Such a map might be useful in talking about risk empowerment with a range of other professionals as well as the person with dementia if this is possible.

Step Four

Risk enablement, management and planning

The primary need for people supporting people with dementia is to identify the ways in which the person living with dementia can maximise their quality of life and do the things they wish to do without being placed in undue danger or suffering harm, or harming other people.

It is helpful to think about ways in which risks can be managed for people who cannot make their own decisions in the following order:

  1. Enablement – can we promote the person’s safety without interfering with their
    enjoyment of an activity? If this is sufficient to make the risk acceptable, there is no need to change the way that the activity is carried out. Examples of this might be taking part in sport or socializing. But if, for instance, a patient keeps walking in to the side-rooms/close bed areas of other patients and causing them distress then a strategy needs to be put in place that meets everyone’s needs as far as possible.
  2. Management: are there ways in which you can change the way that a person living
    with dementia engages with a particular activity or make an arrangement to reduce the risk to acceptable levels whilst still respecting their choices and promoting their quality of life? Remember that a restrictive practice cannot take place without a Liberty Protection Safeguard assessment being carried out.

Practice Tips

Use biographical information

There are many ways in which biographical information can be obtained: talking to the person, using ‘Talking Mats’ (Murphy et al., 2007), observing their behaviour and reactions, talking to carers, family and friends and drawing on life story work.

This will help to see which aspects of their life may be areas where positive risk taking can help.

Abide by statements of wishes & advance care plans

Documents that may have been drawn up before a person loses the ability to make decisions may be useful resources. These might be ‘statements of wishes’ or ‘advance care plans’ or similar.

Some people may have done work on Life Planning after they received the diagnosis of dementia, or before. This can be a useful guide to their wishes. People newly working with a person with dementia should make enquiries about any such documents.

Similarly, people may have told others what they wish to happen to them in certain circumstances. This too is very useful, although a written document can give greater clarity.

An increasing number of people have set up health and welfare elements of Lasting Powers of Attorney and the people they appointed should be involved in any discussions when this is activated.

Engaging the right people in the process

If professionals and paid workers do not know the person well they might not be aware of the ways in which the individual already manages risk, or how their family or supporters have already built up systems of support.

Here, it is important to have discussions with the individual and those closest to them and pay close attention to what they say. They may be managing some risks well and just need support to exercise this power.

In other areas, they may appreciate specialist knowledge and experience. There is evidence that people with dementia and their family carers welcome information and advice, especially when it is tailored to the individual and sensitive to current worries.

Understanding mental capacity frameworks

It is important that we have also taken into account our own feelings about a person’s ability to make decisions for themselves. The Mental Capacity Act 2005 principles state that it should be assumed that people with dementia do have the capacity to make their own decisions unless it is established that they do not.

Any decisions made on a person’s behalf must be in their best interests rather than based on the assumptions, needs or wants of others.

In essence, an activity or an arrangement should be permitted or respected unless risk analysis, including an assessment of capacity if this is in doubt and determination of best interests, shows it should not.

Understand your own fears

Some people find it helpful to think about their own fears in relation to the activity and therefore their own perceptions of risk. Our own feelings can be compared with those of the person and sometimes their carers or supporters.

Professionals try to arrive at an objective and balanced position so that people may take sensible decisions about risks or when acting in their best interests. This is often best achieved by gaining opinions from a range of people close to the person as well as from the person themselves about the risks, and coming to an agreed, shared view about risk in partnership with the individual, their supporters and professionals.

It may take time and skill but the outcome will be that risk empowerment is less dominated by fear and overestimates of danger.