Balancing risk with autonomy and freedom is not an easy task for those who care for people living with dementia, said Professor Susan Kurrie at today’s National Dementia Conference.
Though we live in a risk-averse society, there is actually dignity in being able to take risks, said Professor Kurrie.
“But for patients with dementia, that dignity is often forgotten,” she said.
It can be difficult to balance allowing people living with dementia some dignity of risk, while at the same time keeping them safe, she said.
Some people living with dementia can continue to drive, saidProfessor Kurrie, who recommends driving tests be carried out every six months. Driver training schools can do the assessments.
It is the driver’s responsibility to notify the driver licensing authority of their condition.
A person’s ability to continue driving will depend on each individual’s situation, she said.
Sometimes conditional or restricted licences will be granted with special conditions, such as only being allowed to drive during daylight hours, or outside school hours, or only for certain trips, or within a specified radius.
Though driving with dementia does increase the risks of having an accident, it’s by no means the most dangerous risk factor on the road. Research by Monash University showed that age and alcohol consumption are by far the largest risk factors for driving, though having dementia does increase the chances of being involved in an accident.
Prof Kurrie said ideally people can “retire” from driving, gradually decreasing how much they drive, and then eventually stop.
It’s important to remember that losing the ability to drive can be catastrophic for some people, and has even led to suicide in some cases.
Prof Kurrie said that rather than disabling a person by stopping them from doing household activities, it’s better to ask ‘how can we do it’.
Occupational assessments can be helpful in providing useful information about how much a person living with dementia can continue to do in the home.
The healthdirect website had useful information about dementia care.
Professor Kurrie provided some examples of ways people have adapted to make household activities safer.
- One person who liked cleaning the pool put new steps in so that if he fell in he would be able to get out easily.
- One women who liked ironing and would iron for hours bought an iron with an automatic off switch.
What are people living with dementia really telling us?
Professor Kurrie said her mother was “expelled” from an aged care home after she left the grounds and went walking. She was returned back in a police helicopter.
Often people who have walked all their lies, like to keep walking even after they have been diagnosed with dementia.
What people refer to as ‘wandering’ can be an indication of boredom, or a desire to go home, or simply the person enjoys walking.
“Walking it one of the few enjoyable activities left to them,” said Professor Kurrie.
The key is, how to make it work – accompany them, get ID bracelets so they can be tracked, and get them to wear distinctive clothing.
Professor Kurrie said ‘wandering’ does cause aged care providers stress, and can result in injury and death.
Returning to work
For a person diagnosed with dementia, there are risks associated with returning to work,
A well known defence lawyer who was diagnosed with dementia at 49 was able to work for another eighteen months, not in court but “tagging and bagging”, and then went on to do great things with woodwork.
It’s important to begin to think about winding down from work, and consider putting plans in place for alternate activities.
“There are lots of benefits of having animals. They are great for social interaction. They are better than robots, but probably not as safe,” said Prof Kurrie.
Pets can provide unconditional love, and can be hugely comforting.
But there are hazards. You can trip over pets, sometimes old people will eat the pet food, and pets can scratch and bite.
There is also a risk to the pets, such as being underfed, although more often they’re overfed, said Professor Kurrie. Pets can be neglected, and not exercised.
Dementia dogs have the ability to transform lives. Prof Kurrie told the story of a person who had gone for a walk with their dementia dog, and fallen over. The dog returned home, alerted the man’s wife, and took her back to where the owner lay.
Falls are a constant problem for people living with dementia, said Professor Kurrie.
People with dementia fall as least twice as often, and fracture three times as often, she said.
Simple exercises, such as sit to stand and standing on one leg, can help with preventing falls.
Walking aids, hip protectors, protective clothing, and getting rid of the environmental hazards can also help.
It is quite common for two people living with dementia in care, who aren’t married to each other, to form intimate relationship while they’re still married to another person.
This can be difficult to deal with, and often families worry the person will want to remarry, though people living with dementia are generally not able to marry.
What’s key in these situations is thinking about what is important for the person at that time.
Disallowing someone the expression of their sexuality is an infringement of their human rights, a factor that must be considered, said Prof Kurrie.
The issue of consent is also important.
But people with dementia can generally make it very clear what they do or not want to do, said Professor Kurrie. They are able to make it clear it they don’t want someone to put their arm around them or kiss them, she said. They are able to express their wishes and preferences.
Prof Kurrie told the story of the first female supreme court judge in the US, Sandra Day O’Connor, whose husband lived with dementia and developed a relationship with another woman. The new couple wanted to get married. Though Day said should would not divorce him to allow them to get married, she did allow them to hold a ceremony of commitment.
“It was a very generous way to allow him to find that happiness that she was not able to give him at the later stages of their life,” said Prof Kurrie.
Balancing safety and freedom is not easy
Balancing risk factors with a person’s autonomy and your own duty of care is not an easy task for people who care for someone living with dementia.
“Life itself is a risk,” said Professor Kurrie.
“You can’t eliminate the risk, without eliminating the person.”
Professor Susan Kurrle, Curran Professor in Health Care of Older People, Faculty of Medicine, University of Sydney, Director, NHMRC Cognitive Decline Partnership Centre, Clinical Director, Northern Sydney LHD Aged Care and Rehabilitation Network & Senior Staff Specialist Geriatrician, Hornsby Ku-ring-gai Health Service