What are some of the challenges faced by people living with rare dementias that are distinct from those presented by more common dementias?
Dementia is incredibly devastating for families at any age of any type, but rare dementias bring additional problems almost by definition. People with rare dementias may have inherited their condition and they often present symptoms around middle-age, so they don’t fit the stereotype of being very elderly. It’s therefore harder for them to get a diagnosis, to get support and to get appropriate information. To quantify that slightly, just on average, it takes someone living with a rare dementia a whole year longer to get a diagnosis.
It's also hard if you've got problems where, for example, your problem is not memory, but it's visual processing, as with posterior cortical atrophy, or if it is language-led. In both those situations, you often have a greater awareness that you are losing the ability to read or losing your ability to speak. Having an early onset dementia is devastating for the whole family, but, if it has a genetic, autosomal dominant, cause, it has even wider implications, as your children will then have a 50% chance of developing the same condition. How do you tell a child that what they're seeing their father or mother go through they're likely to have as well?
How has support for people living with rare dementias changed from early in your career to now?
I think it's still woefully inadequate, honestly. It has improved, but it's still very difficult for people to get support. The statutory provision, for example, respite care or day centres, are used to dealing with people who are very elderly. If people living with rare dementias are 50 and fit and they’ve got behavioural problems, they often can’t get that practical support. There are increasing services for what's often referred to as ‘dementia of working age’ or ‘young onset dementia’. They are a great advance in terms of being able to signpost, but still, it's very poor. There's a massive gap.
How does Rare Dementia Support help people living with rare dementias and how can these people support research through the Dementia Research Centre?
The Rare Dementia Support is an umbrella organisation led by families and people who care about these rare dementias. Just finding somebody else to speak to who's been through the same thing is helpful, but I think there is a great advantage of being able to find that there is somebody who knows about your condition. Peer support is very powerful. The individuals who've lived with somebody with dementia have great lived experience. They've found out what works, what doesn't work. They have some difficult and painful experiences, but, also, they’ve got some very valuable experiences to pass on to others. That's really central to what Rare Dementia Support tries to do: to not lose that valuable knowledge and experience.
If people know what they're dealing with, they can then also seek out how they can take part in research. We know that advocacy groups and support groups make a huge difference to people going into research. Dementia lags hugely behind other fields like HIV or cancer in terms of the proportion of people who go into research. With rare dementias, it's all the more important. If we've only got one or two hundred families with familial Alzheimer's disease, we won't be able to do trials unless we’re successful in recruitment, and they have to know about that in order to be able to find out more and possibly volunteer.
