The World Health Organization estimates that more than 47 million people are living with dementia worldwide, and that number is expected to reach 75 million by 2030. In Canada, more than 700,000 people have some form of dementia.

DementiaHack is a project supported by Facebook, the British, Canadian and Ontario governments that aims to help dementia sufferers and their caregivers by identifying “real-time immediate and tangible products and services…and turbocharg[ing] them to market,” said DementiaHack chair Jordan Banks, managing director of Facebook Canada.

On Oct. 3, a workshop was held at the MaRS Discovery District in Toronto featuring a panel of researchers, caregivers and people living with dementia who gathered to share insights with technologists and developers. It was the lead-up to the DementiaHack Hackathon, a technology conference that takes place Nov. 7 to 9 at George Brown College in Toronto.

The CJN spoke with DementiaHack panelist Dr. Joel Sadavoy, director of the Reitman Centre for Alzheimer’s Support and Training and head of the geriatric and community psychiatry programs at Toronto’s Mount Sinai Hospital.

What is dementia?

Dementia is an umbrella term that refers to impairments in brain functioning that interfere with core mental abilities, particularly memory and the ability to understand and comprehend, to speak, and to carry out actions both simple and complex. The term encompasses a variety of specific illnesses, so there are different kinds of dementia. One of those is Alzheimer’s disease, which is the largest component of dementia, but there are several others, such as vascular dementia, frontotemporal dementia, and Lewy body dementia. All have the same kinds of impact overall on these core functions of the brain. In addition, because of those changes, there are almost universally behavioural changes that occur, and while they’re not considered core symptoms of dementia, they’re so common they might as well be. However, they vary from person to person.

Why are you participating in DementiaHack?

I’m particularly interested in finding a way to enhance what goes on behind the scenes in people’s homes, which is at the core of the difficulties they have in managing on a day-to-day basis. I am also fascinated by the idea that we can bring together perhaps hundreds of creative brains to address a topic that has remained very much in the shadows until relatively recently.

What kinds of therapy-based skills for caregivers are available?

Caregivers need accurate information and education, as well as practical services, respite care, in-home personal support workers, and aids of various sorts – which is where most of the resources, training and skill development for dealing with dementia go. We train practitioners to do this work, but we never train family caregivers, and they’re the ones who have to deal with this. The most effective thing we have right now is interpersonal connection and interaction, which is what families do, and it’s really one member of the family that has to do this more than others. Those people are untrained and not educated about the disease, and they don’t quite know how to navigate the system to get the resources they need. 

However, equally and often more so, they don’t have the skill sets to address the problems that come up: the aggression, the paranoia, the wandering, the agitation, the resistance to taking medication or not having a shower. There is no or very little attention paid anywhere to the emotional needs of caregivers. If caregivers are not effective in this role, then it will cripple our health care system.

There are very few therapies in place to help these caregivers. There are support services and education programs, but education, we’ve found, is not the most important element. It is actually both skills training and emotional management – they are the two most important elements. For those to happen, they have to be quite specific to the needs of individual families and caregivers, because dementia looks different in one family versus another. The Reitman Centre is the only one place I know of that does that kind of systematic approach to skills training in problem-solving and sustaining emotional capacity in caregivers.

Is there treatment for dementia?

There’s no cure for dementia. Medications might slow things down a little bit. Very occasionally, people will respond with some observable improvement, but that is unusual. Medications exist for the secondary effects of dementia – some people get depressed, some people get agitated, or paranoid, or psychotic, and they lose touch with reality. Sometimes the medications we have can be effective temporarily for those things, but there are lots of side effects, so we have to be very cautious about how we use them. Medication is really not the answer for dementia. We don’t have a medication that I would say is substantially effective. The cognitive approaches are, I think, largely in the experimental stage.

You manage dementia. You understand the elements of it. The goal is really to maintain as much human engagement and interaction with somebody as possible. Dementia goes in stages. In the early stages, the relationship, communication and engagement are relatively normal. You can talk to somebody with early dementia and they make sense – they understand, and while there are some deficits in their abilities to do certain things, their personhood remains very much evident.

As the disease progresses, it eats away at individuals’ core functions, and often at their personalities as well. Their ability to make themselves known, to communicate, and to maintain a relationship with others, starts to get damaged. As that happens, they require a different kind of engagement with the world. They can’t do it by themselves any longer, so they need a partner. They’re not going to partner fully with a personal support worker that comes in seven hours a week, so their partner in the management of dementia is going to be somebody close to them. Usually, that middle phase happens at home. 

Treatment involves partnering with someone who can understand the needs of the patient and do things they can’t do for themselves, as well as maintaining the relative health and activity and human engagement of the individual. This is much more than just chicken-soup support. It’s actually very hard work, because the caregiver has to think for two at every turn: What’s he going to eat? How is he going to eat? Can I get food? Can I get the medications into him? Does he need medication? Do I have to take him to the hospital? Is he sick? Does he need a shower? Does he have to go out? Should I take him to the doctor? What time should he go to bed? What time should he wake up?

Is dementia hereditary? 

Partly. Genetics is not the most important thing, but there are some genes associated with dementia. We’re searching a lot for genes in dementia, but we haven’t really found convincing evidence that the majority of dementia is hereditary. Some kinds of dementia run in families, but it’s a very small number. Perhaps five per cent of the dementias are hereditary, Alzheimer’s disease in particular.

Are there tools for early identification, assessment and treatment?

We are much better at early identification than we are at doing anything about it. We can image the brain with PET scanning and functional MRI, and, increasingly, we can identify people who are at risk of getting dementia or who have it in the earliest stages. You can also identify them with psychological tests. Sometimes, just by doing an assessment on the basis of their functioning day-to-day, we can tell when things are starting to slip. Nevertheless, once we do that, we have very little to offer. Right now, what we’re offering are lifestyle changes, recommendations for diet, exercise – all the things that are good for the heart you would also do to make the brain feel better. 

It’s thought that dementia probably starts 20 or 30 years before the disease actually becomes identifiable, and there are some factors that are probably related to various forms of dementia, such as blood flow problems, which may be amenable to lifestyle change. So keeping your blood pressure under control, keeping cholesterol low, exercising, eating one of those great diets like the Mediterranean diet – all those things are probably useful.

There may also be some use in tuning up the intellectual side of the brain. There is some data that the more highly educated people are, the more they’re protected. I don’t think it actually protects against getting the disease, but it may push the worst effects forward so that they emerge a bit later in life. I would say the most effective things are those things people really like to do. It is probable that novel social interactions of various sorts – where we are stretching our brains and engaging with people and thinking out of the box – are beneficial. That kind of creativity is probably a lot more effective than brain gyms or any other games, but I’d say if you love crosswords – do them.

This interview has been edited and condensed for style and clarity.