Imagine then if you can only remember a life of pen and paper, and modern technology is an alien concept. For people with dementia, an abbreviation in a text message could remain utterly unfathomable permanently. Having to remember a pin number could end your ability to go out shopping with a card that in theory provides access to your money, but only if you can remember those magic digits.
As dementia progresses, telephone calls can become problematic because you need visual clues to be able to communicate to the best of your ability. Even trying to operate a TV remote can leave you frustrated and bewildered – so many channels, so much choice… maybe too much choice. The world can become an increasingly isolating and unfamiliar place when your mind no longer helps you to process information that the rest of us take for granted.
Many of these problems stem from living in a faceless society. We communicate less and less in person – if an email or text message will suffice it is often quicker and easier. We use numbers to keep our cards secure when once a simple signature would have been all that was needed to purchase goods. Many shops now expect you to serve yourself when you want to buy something. We are encouraged to bank online, but again this involves remembering the right answers to get through the security. Even making a phone call regarding a service can leave you wading through those dreaded selection menus, unsure of which button to press – if you can even recall what all the options were.
How do people with dementia cope? The answer is with great difficulty. If you are fortunate enough to have a loved one caring for you, much of the burden of running the affairs in your life (be they financial, social, or simple household matters) will, over time, fall to them, which in the case of financial affairs often means going through the complex processes of Power of Attorney (if you are able to facilitate this). That is not to say that you necessarily want to lose control over your life, just that the systems within our shops and services are not, at present, widely adapted to help people with dementia to remain in charge of their affairs.
Thankfully the Dementia Friendly Communities initiative is involving leading companies in trying to understand how they can modify their systems to help people with dementia. Let’s hope they can grasp the scale of these problems, the debilitating effect they can have on daily life, and find ways to modify how they run their businesses to help people with dementia to keep their independence for longer.
But what about the more basic problems like using the telephone and operating the TV? Making devices simpler is one solution, but ultimately someone with advancing dementia will often come to rely on those nearest and dearest to them to help with their communication and entertainment needs. Proof, if it were needed, that nothing can really beat human contact.
So can technology and dementia ever really be happy bedfellows? You might think that is unlikely, but as awareness of the needs of people with dementia grows, there are plenty of companies looking to innovate products that can provide real 21st century solutions that benefit rather than baffle people with dementia.
Of course they won’t work for everyone – after all the best dementia care is about focusing on the individual and what is right for them. It's also unlikely that one piece of technology in isolation will be useful for a person throughout their entire life with dementia. Nevertheless, I think my dad would have benefited from a little technology in his life, not least a device that could have alerted us when he collapsed at home, and prevented him being left on the floor all night. Equally, technology that could have provided the kind of support and peace of mind that might have kept him living in his own home for longer would have been a plus point.
So, sometimes technology can be a positive thing for people with dementia, and indeed sometimes it is actively embraced by those living with the disease. Take for example how some very inspiring people who are living with dementia are communicating their journey through blogs and social media. It always reminds me that for everyone I meet who tells me they don’t understand social media and "could never blog" there are some people, facing huge challenges with cognition, who find a way to break down those barriers and get their stories out there. For them, getting technical is a lifeline, and for us it means we can learn from the REAL experts in dementia.
The problem is that new technology is aimed at the 14-25 age group. Take the example of mobile phones- each new model gets more and more complicated. Before dementia, my mother was happy to text. Not now. It took an enormous search to find a 'simple' phone. It is so straightforward she uses it in preference to the landline phone.
ReplyDeleteTV remotes are a nightmare. Even drawing a diagram for her highlighting the volume and channel buttons wasn't much help, they cram so many other options onto them. In sheltered housing a mile away, we would often drive to her place to switch channels for her, after we had taken her home.
Luckily, she has rallied a little, enough to be able to do this for herself now, though the DVD player is too much for her, and so is the radio, though we found the simplest one possible.
I'm told it isn't unusual to recover a little at first, after a TIA (she had 5, leaving her with vascular dementia at 67) -recovering a little memory and cognitive function as new pathways are found in the brain. But I know ultimately the spiral will be downward. Losing ability to do things and understand things makes her frustrated.
The is a huge gap in the market for simpler versions of things, and manufacturers need to jump in there and not just concentrate on design for youth. Maybe the 'age charities' could lead a campaign for this, and get the problem noticed.
I think that the idea of merging technology with dementia care is an intriguing thought. A bigger problem is the educational gap that has been formed in the U.S. regarding dementia in terms of speech pathology. Many times the students go out there and have absolutely no idea about dementia, but the money is in the demented population, so they go there and underserve the population. Oftentimes the student is FORCED to go to third party companies (like the Speech Team, CIAO, etc.) and get their appropriate training there.
ReplyDeleteWith that kind of disconnect between students of speech pathology and dementia in general, is there really a hope that the younger generation can start to develop appropriate technologies for this disorder and its population?