CHRIS PERKINS discusses some innovative methods of communicating with people living with dementia that can help them to make the important decisions in their lives.
Supported decision-making (SDM) is about helping people with disabilities to make their own choices in life. In the field of dementia, we might already be doing this without being aware that what we are doing is SDM.
When we ask someone with advanced dementia what they would like to eat or offer a choice of different outfits to wear, we are giving them some control, even if only in a small way. Equally, assisting someone with mild impairment to manage their investments is the same. This contrasts with the old idea that once a person is diagnosed with dementia, then someone else needs to take over the decision- making.
We continue to push for older people to appoint an Enduring Power of Attorney (EPOA), but it is important to remember that the attorney, even when the EPOA is activated, must continue to consult the person with a disability as much as possible. By supporting someone with dementia to make his /her own decisions we are upholding their human rights, individuality, dignity and self-respect.
The importance of people with disabilities having the opportunity to make their own choices and to be involved in all decisions concerning them is recognised by The United Nations Convention on the Rights of Persons with Disabilities (2006). To achieve control over their lives, some people with disabilities need help to make and communicate their decisions. The goal is to move towards the person being supported to make their own decisions and away from someone else making decisions for them (substituted decision-making).
This is the background to the hui held 20-21 April 2016 entitled ‘The Conversation: Supported Decision-making’, which was sponsored by the Office for Disability Issues and Auckland Disability Law. This event began the discussion about SDM in New Zealand. At the hui the representatives of a variety of groups presented issues for discussion and the New Zealand Dementia Cooperative hosted a panel to discuss SDM in dementia.
Dementia is different from many other disabilities in that it is not a static or stable condition. With progression there is a gradual decline in abilities to remember, reason and communicate. Furthermore, episodes of illness, delirium, pain, poor hearing and eyesight, being unaware of the time of day or where they are can impact on the person’s ability to think clearly.
This means that the support given to a person to make decisions will vary through the course of the condition and from day to day.
We need to ensure that the environment and the person’s health is as good as it possibly can be when helping them to make and communicate decisions.
Communication with people with dementia was our first panelist’s topic. Annabel Grant, speech and language therapist at Massey University, shared her system to assist people with dementia to communicate using the acronym ‘MESSAGE’, briefly described below.
M – Maximise attention
E – Expression and body language
S – Keep it simple
S – Support their conversation
A – Assist with visual aids
G – Get their message
E – Encourage and engage in conversation
Grant introduced the ‘Talking Mat’, a visual way for people with dementia to communicate. She also told us about the website www.demtalk.org.uk that offers an online toolkit for effective communication with people with dementia.
Psychologist Sharon Brandford followed up by demonstrating some Talking Mats she had used for discussion with people with intellectual disabilities and dementia. Talking Mats help people to make everyday decisions, and taking photos of the completed Mat helps build up a picture of a person’s experiences and choices over time.
For best practice in SDM we need to trial communication aids and strategies to augment communication, involve the person in decision-making at all levels and maintain records of their choices. This is an ongoing process that should be implemented long before any major formal decisions have to be made. In that way we develop an understanding of the person’s values and preferences.
Providing support is not always straightforward. Richard Worrall (old age psychiatrist, ADHB) told the story of a very independent person who refused input and made her own decisions that seemed very risky. Worrall introduced the concept of ‘openness’ – the degree to which a person is willing to be supported. Without some openness it is impossible to help people in decision making, though too much openness might leave the person vulnerable to coercion. This presentation introduced the dilemma of what to do when people are determined to do something that makes us very anxious for their safety.
Advance Care Planning
Another way that people can express their preferences is through an advance care plan (ACP). This allows people to make decisions about care should they develop dementia (or other conditions) that make it difficult to decide or communicate. However, Gary Cheung (old age psychiatrist and researcher, The University of Auckland), in a study of capacity to make an ACP, found that over half of his research participants, including apparently cognitively normal older people, lacked this capacity. Clearly, many older people would need support in making an ACP.
More questions than answers
Any discussion like this raises more questions than answers. Do we only ask people with dementia to make decisions about things that matter to us and not to them? What if they decide to do something we think is risky? How do we balance safety and autonomy? Is the risk to physical safety more important than the risk to personhood when we override people’s decisions? When does persuading, encouraging, cajoling or coaxing tip over into bullying and coercion? What if the person decides they want to do something but the services are inadequate – they want to go for a walk, but the carer is only allowed to give them a shower? And so on…
Discussion with people with dementia can be time-consuming but ultimately rewarding and new methods of communication can make the process more enjoyable and effective. To truly respect and value people with dementia we must take the time to reach out and understand them to enable them to make their wishes known and give them our full attention. With appropriate support, they can continue to have control over decisions about themselves for longer than we might have thought possible.
Recorded information from the hui will be available from Auckland Disability Law at the end of June 2016.