Dementia - facing the facts, what needs to be done...

Dementia is a life limiting condition, as are many forms of cancer and heart disease. Unlike the latter two, we have yet to find a way of fighting it.

Along with these well known diseases, dementia is also a killer. Unlike dementia, both cancer and heart disease are very much in the public domain. Everyone has heard of them. Dementia, by comparison, still lacks sufficient awareness in society - yet every single person will be affected by dementia, in one way or another. They may go on to develop dementia themselves, or a family or friend may one day be diagnosed with it.

The life expectancy of someone, once diagnosed with dementia, can be as short as three years or less! That is terminal! There are a number of reasons for such a short life expectancy - one may be age, but it is frequently due to late diagnosis, along with other complications that accompany the condition.

Whilst some forms of dementia may only begin to become apparent due to behavioural changes, others, such as vascular dementia, are linked to medical conditions such as hypertension (high blood pressure), diabetes and high cholesterol. Once a person is diagnosed with these conditions, screening for dementia should take place immediately. But, it doesn’t.

My Mum was diagnosed with all of the above, apart from dementia, quite a few years ago. Due to childhood rheumatic fever, she had suffered high blood pressure problems for much of her life. In the early 1960s, this directly led to the still-birth of my sister. Mum was not diagnosed with vascular dementia until 2011.

It wasn’t until I noticed a number of cognitive changes, that her Doctor listened and took note. With someone of Mum’s age (now 86), and her known medical conditions, screening for dementia should have happened much sooner. Whilst there is no cure, there would have been a better chance of delaying the progression of the condition with earlier, and more appropriate medication.

As it was, she suffered a small stroke in about 2006, and subsequent TIAs over the next few years. With the right treatment, these might have been avoided, or at least the effects minimised. Late in 2012 she suffered a serious UTI, which her Doctor failed to diagnose, the consequences of which had a major impact, both mentally and physically.

Mum is now in the mid stages of dementia. Cognitively she is still doing well, but she has lost mobility. Whilst she is able to move, she can no longer stand or walk. She is urine incontinent, and is partially bowel incontinent. She is still able to eat and swallow, but often gets distracted, if she is feeding herself.

She needs to be encouraged to eat and drink - fortunately she still has the ability to swallow. She is able to communicate vocally, very successfully, although she sometimes has difficulty in finding the right words, and if she fails, she creates a new word, based upon the correct word. Understandably, this can sometimes be quite amusing.

Of course no-one knows what will happen next. By comparison, when my Dad was diagnosed with multiple myeloma and cancer of the oesophagus in 1993, we knew he had approximately one year to live. Dad followed that prediction, and remained active, albeit in a much reduced way, until the last 72 hours of his life. We knew what was happening, and were prepared for the worst when it arrived.

With Mum, it’s different. Our understanding of dementia is still limited. Any disease of the brain can be life limiting. The brain ultimately controls all of our bodily functions, and as the brain slowly dies, it is less able to control other life essential functions, especially eating and drinking. As a result, someone with dementia becomes more susceptible to other problems, primarily infections, but also the possibility of blood clots, through inactivity. Some of the most common causes of dementia related death are pneumonia, UTIs, strokes, acute kidney injury through dehydration and DVTs.

Research needs to continue to focus on earlier diagnosis of all forms of dementia, in order to enable those who develop it, to live as normal a life as possible, for as long as possible. Once dementia is diagnosed, treatment needs to be pro-active, and revolve around quality of life, and not just an endless course of re-active treatments for conditions and infections, as and when they occur.

Until a cure can be found - dementia, in all its forms, is life limiting. Those diagnosed should be provided with the care and treatment required, to allow them to enjoy what limited time they have. Families should also be made aware, that like many forms of cancer and other diseases, dementia is terminal, there is, at present, only one ultimate outcome...

Using Android tablets and devices to help someone living with dementia

I recently started trying out an Android tablet with Mum. It is all very much hit and miss at the moment, and there is precious little information available about suitable apps for those living with dementia. There are plenty of apps providing information about dementia, but, it would seem that very few people have actually compiled anything about the usefulness of certain apps, to help people living with dementia. The tablet I'm using is WiFi internet access only, but for our use that’s fine.

As things progress I will post more information, in order to help others, who want to try such an Android device, or indeed an Apple iPad, or Windows tablet.

To start with, I've considered various ways in which a tablet can be employed, both as an interactive tool, and as an aide to help carers looking after a loved one.

Interactive games

So far, I have discovered that simple interactive games seem to work best with Mum, such as Pocket Pond 2 (similar to Koi Pond), and Talking Pierre, an interactive parrot, that attempts to mimic sounds, and responds to touch and swipes. There are of course a plethora of game apps available, so it would be a case of trying them out to see which work best. Many are free to use.

Memory book

 

I’m creating a memory book for the tablet, with photos and stories from Mum’s past, to stimulate conversation and memories, and help others get to know her better.

The best way I have found to create such a book, is to first produce it using a DTP program, or something like Word, then convert the whole thing into an .epub file. There are a number of .epub convertors available, some are on-line convertors, whilst others are downloadable. Unfortunately, there is often a size or page limitation with on-line convertors, or a limited trial version of downloadable convertors. MePub has a free trial version, and unlike many others, the full version is reasonably priced at just under £25.

The e-book, can then be uploaded using Google Play, and accessed on an Android tablet, in the same way as any of the many e-books available. Using an e-book widget, the link to the e-book can be placed on the main screen, so that it is easy to find, for future use. If the e-book needs to be accessed when not on-line, it can also be downloaded for off-line use.  A similar process could be used for iOS, Windows Mobile and Kindle.

E-books

There are thousands of titles available on-line, and tablets make perfectly good e-readers. Many tablets will have Google's own Play Books pre-installed, others may have Aldiko, but there are plenty of e-readers available, many of which are free. Some even come with free access to thousands of e-books.

Audio books

The tablet can also be used for audio books, the Audiobooks app on Google Play has 2,800 classics for free. English Audiobooks - Librivox, also on Google Play, has over 3,000 titles, it's really a case of hunting around to find which one suits best.

Live TV

 

I’ve installed the TVCatchUp app, to stream live TV. Many of the UK Freeview channels are available, and can be watched, wherever WiFi is available. Once again there are quite a few live TV apps to choose from, many of which provide live streaming TV channels, via the internet, from all over the world.

YouTube

 

Mum likes watching Andre Rieu concerts, and quite a few of these are available on YouTube. There are of course many other videos available to watch, and these can be found in a variety of ways, including voice search, if needed.

Clock

As many will know, I created a set of files for a dementia day clock, (available free at www.sussexrokx.blogspot.com) for use on digital photo frames, a tablet could be used in much the same way. The tablet would need to be plugged into the mains, due to the power consumption of a continuous display, apart from that, the principle is pretty much the same. Older, redundant smart phones, could also be used, but the smaller screen size may prove problematical. These devices can also be used to provide an audible message when required.

Diaries and journals

Keeping a diary of notes about your caree’s condition, is useful for the carer, the caree, and health care professionals. At the moment I use paper based notes and forms, but will soon be transferring these to the tablet. There are a number of medical diary apps available, some are general, whilst others are condition specific.

Medication alerts

Medication reminders are also useful, especially for people living alone. There are quite a few such apps available on Google Play.

What about that old smart phone sitting in a drawer?

IP camera

If you have an old unused smart phone, why not use it as a remote camera device connected to your home WiFi, to monitor your caree? There are a number of apps available, some for security surveillance that are triggered by motion, or apps originally created to act as baby monitors. Some apps provide continuous streaming, so you can monitor your caree on a laptop or Android device, anywhere in your home. For long distance caring, some motion detector apps will send an SMS or email from the phone to provide an alert. Some will also trigger a sound, which could be used to play a message, warning your caree if they are about to wander.

I have set up an old HTC Wildfire to act as an IP camera, over the home WiFi network, to monitor Mum, wherever I am at home. I’m also looking into how something like this can be used remotely, using mobile phone networks.

Tracking devices

That old smart phone is still useable as a phone, and if needed, could be used as a tracking device. In the case of my Mum, that’s no longer necessary, but for others it is certainly an option worth considering, as the cost is minimal using a pay-as-you-go SIM card, and one of the many free apps available. Compared with dedicated devices and services, the cost savings are quite substantial.

I know the idea of tracking is somewhat controversial, but my own opinion is that it provides greater security, enhances independence, and provides reassurance for both families and their loved ones.

What next?

It's early days yet, and these are just some of the options I've discovered so far. No doubt, there will be many more. I can certainly say, with a little imagination, such devices could prove invaluable to both carers and carees alike.

There are of course other apps that could prove useful, and I've yet to fully explore, these include things like Skype, or using video apps to record thoughts and memories.

Darren's blog

A Twitter pal has also published a blog post about how, as someone who helps care for others, he uses his Android tablet here...
darrengormley.blogspot.co.uk/2013/08/my-tablet-and-me-top-10-activities-for.html

Update - Sept 11 2013

Having just learnt from a fellow carer about her husband, who has suffered a major stroke, and is no longer able to speak, why not use a tablet with an app with assorted images which when touched "speak" to others, to indicate what is needed. Apparently his cognitive skills are still there, but he has lost the ability to speak. Surely this is the most obvious solution! Has it been used? No!

Preparing for the end...

In a way I’ve been preparing for this scenario for quite some years. The first alarm bells rang out over a decade ago. Mum had a really bad bout of flu. There was no sign of the later dementia at that point. As a result of the flu, she’d become weak and dehydrated, so much so, that I made the decision to take her to take her to A&E (ER).

After “booking in”, we saw a triage nurse, who suggested I should take her home, monitor her, and give her Paracetamol. I stood my ground, pointing out that her demeanour was not normal, that she was dehydrated, and very weak. She needed support walking, and negotiating stairs – at that time, this was not normal.

It worked. Within a short space of time, we saw a Doctor, who was very concerned about Mum’s condition, not serious enough to admit her, but serious enough to ask whether she could be looked after properly for the next week.

Fortunately, I lived not too far away, and was able to stay with Mum, and look after her. This would be my first taste of what was to come. She was given antibiotics, and I was told to make sure she had plenty of liquids. Within a week, she’d made an almost full recovery. The frailty and vulnerability she’d displayed during that short period, made me much more aware of how vulnerable she was becoming - to infections, and other potential problems.

That was in 2002. Since then, our journey has taken many different twists and turns.

Subsequent to this event, she had a bout of shingles - this had a minor effect on her mobility, nothing serious, she was just a little less agile, but more seriously, became more prone to falls. The falls she had, were never too serious, and apart from the shock, she recovered easily. Until one day, she fell, and broke her wrist.

Whilst she again recovered quite readily, her confidence was waning. Her short-term memory also seemed to be deteriorating. More alarm bells!

As a result of these changes, she was eventually diagnosed as having suffered a minor stroke. Quite probably a TIA. More of which were to follow.

She’d earlier been diagnosed with Type 2 diabetes, and the hypertension she’d had much of her adult life, was finally treated with medication. As a child, she had suffered from rheumatic fever, and this undoubtedly affected her heart, as indeed it does with many who have suffered the disease. Unlike others though, she is now in her eighties. Many don’t make it past their fifties.

Forgetfulness and unfamiliarity with everyday objects - stove, washing machine etc. became more pronounced. She suddenly couldn’t remember how a familiar washing machine worked, or she’d get confused with the knobs on the stove (no surprise there – I still get that wrong!). She’d start to ask the same question over again, grind her teeth, or get agitated over something quite trivial.

It was becoming clear that something wasn’t right. After discussions with her doctor, she was finally assessed, and given a CT scan. In 2011 - probably far later than should have been the case - the diagnosis given, was vascular dementia.

Apart from slightly reduced mobility issues – the dementia shuffle – she continued to be pretty active. She was now living with me, and I’d taken on the more complex tasks she would have once carried out. Cooking for herself, was no longer an option, it would have been unsafe.

Until the beginning of 2012, I was in full-time employment. Towards the end of 2011, there were a number of incidents demonstrating that it was becoming an issue to leave Mum alone for any length of time. She wandered - not far - but was not able to find her way home.

It became clear that leaving her alone, even for a short period, was no longer an option. I had to make that very hard decision - to stop working - and start caring for Mum. It’s a very difficult one to make, and there are many who choose not to. Other commitments - children, work, finance - prevent them from making such a choice.

As a result of my own circumstances - I was unmarried, with no (known) children - I was in a position to be able to dedicate my time to Mum. This decision was made easier by the fact that I didn’t enjoy the job I was in. Had this happened a couple of years earlier, such a decision would have been much harder. Then, I was working, on a freelance basis, for a company that understood, and for whom I enjoyed working. And, the flexibility I had, would have enabled me to carry on both working, and caring for Mum. Much of my work could have been done from home.

My last job didn’t have that flexibility - I was left with no choice, care for Mum or carry on working - that for me, was a no brainer! Even though my income disappeared, I chose to care.

Caring at this stage was relatively easy - making meals, cleaning, washing, and general household duties. There was a problem however, with where we lived - a second floor apartment, in a building with no elevators. Mum was finding stairs increasingly more difficult to negotiate.

Fortunately, we were able to find a ground floor apartment, in a small block, designed for people with limited mobility. We moved in August 2012. Early the following October, Mum was admitted to hospital with a TIA. She only spent three days in hospital, but, her cognitive abilities had started to diminish.

Over the next few weeks, her confidence suffered, and her mobility decreased. A month after her TIA, she was hospitalised again, this time with a severe UTI. At the time of her admission, she’d all but lost any of her earlier mobility.

After three weeks in hospital, Mum came home. She was incontinent, unable to stand, and needed a wheelchair and commode. The change was dramatic - one of those notable steps - often referred to, with the progression of vascular dementia.

Mum is now, for the most part, bed bound. I take her out from time to time in the wheelchair, this, however, she finds quite tiring. She's happiest in bed.  Fortunately, before her discharge, all the necessary equipment needed, had been put in place. Mum is now well looked after, happy at home, and content. So far, she has not developed any of the problems associated with being bed ridden. She has no bed sores, and her skin - although high risk - is healthy and intact.

This has been our journey thus far.

From a personal point of view, I now have to consider the future. I know that the inevitable will happen, but I don’t know when. Everyday, Mum becomes a little bit more dependent upon me. I have become closer to her, if that’s possible, yet slowly, I’m losing my Mum. The Mum I knew as a child, has gone. She is now frail and vulnerable. She looks to me for love, protection and reassurance - much as I did to her, when I was a child.

Mum is now my “child”, though I certainly don’t treat her that way. Her needs are similar to those of a child - she needs washing, she needs help with feeding, and she needs her pads (diapers) changing. What she did for me as a baby, I now do for her - that lovely lady - who was once, and still is, my Mum.

As a result of her age and health. our time together is limited. How long? Who knows? My Dad died in 1994 of cancer. Coping with his ending was relatively easy - we knew, after diagnosis, within months, how long he had to live. We were able to prepare for it. Even during his last week, Dad was able to do everything for himself, except during his last two days. When he died - he was my Dad - unlike Mum, he wasn’t someone who needed someone to look after him.

Mum’s situation is different. She needs me - she needs my love, affection, reassurance and security. How long this will continue, only time will tell. As I sit here typing, I don’t know whether it will be tomorrow, next week, next month or next year. All I do know, is that it will happen. How do I prepare for that? How do I prepare for the event, when an increasingly dependent person, who I love dearly, a love, that through increasing dependency, grows by the day, is suddenly taken from me?

Is there anything that can prepare any of us for that?

Will I cry? Yes. Will I grieve? Yes. Will I be upset? Yes. Will I be happy? – If Mum suffers in any way during this journey, and it relieves her suffering, the answer has to be yes. I won’t like it, at that point my caring journey will end. There will be a huge vacuum in my life, but also an enormous opportunity to resume the life I had before.

Mum would want me to do that, and that’s the most important part of her final legacy. If she hadn’t wanted me to do as much as I could in life, she wouldn’t have had me in the first place. Life will go on, and once the pain has subsided, the memories will still be there. In my heart and soul, Mum will always be with me, she is part of me, just like Dad.

I love them both, and always will.

Dementia friendly communities

Dementia friendly communities – are we doing enough?

There are many initiatives with the aim, or indeed mission, to raise dementia awareness. This can only be good, but is it enough?

If we are to create truly dementia friendly communities, we need to ensure that everyone is aware of the condition, its causes, and the effects on the people living with it. We need to look at the way we and society in general categorises dementia. Is it a disease? Definitely not! It may be caused by underlying diseases, but dementia itself is a condition, not a disease.

There are many reasons why people develop dementia, some are known, yet the not all the underlying causes are fully understood. Alzheimer’s is the most common, closely followed by vascular dementia, along with Lewy Body and Pick’s. There are over a hundred known causes of dementia, and probably yet more to be discovered. Parkinson’s disease and Huntingdon’s disease can also result in dementia, as can CJD and HIV/AIDS.

Dementia is not a condition limited to the elderly, there are over 17,000 people in the UK, under the age of 65, who have dementia. At some point in our lives, dementia will affect, directly or indirectly, every one of us.

Solutions

There are different ways of creating dementia friendly communities, along with different ways of helping those with dementia, live a full and normal life. Below are just two examples of possible solutions being used in the UK and Holland. Both have been in the news recently, and both have attracted criticism.

 

Institutions

In Holland, in Weesp near Amsterdam, they’ve created what has become known as a “Dementia Village” called Hogeway. As far as the residents are concerned, it is a “normal” community with “normal” facilities. Yet, the shopkeepers and hairdressers etc. are actually carers, watching over them, and monitoring their every move. Residents are free roam around the grounds of the facility, yet they are not free to go beyond its confines, unaccompanied.

Whilst this approach may well be progressive, in that it provides security, and a perceived level of normality - it is still, in effect, an institution, harking back to darker times. Residents are not free to move around the wider community, they are confined within a safe, yet regulated, institution. They are presented with a “Truman Show” type of environment, where everything is not quite as it seems.
This “head in the sand” approach, is safe, and yes the residents are well cared for. Is this the right approach? Should we "lock" people with dementia away, in a little world, that may seem normal, but isolates them from every day life?

Freedom

A completely different approach is being introduced where I live in West Sussex, UK. Sussex Police have obtained a number of tracking devices, linked into a service already used by West Sussex County Council. These devices are issued to people with dementia, who have a propensity to wander, on a regular basis. In some quarters, this has caused an outcry, with the opponents referring to the system as “tagging”, and a means of saving Police time and money.

Tagging it certainly isn’t! Users are still free to engage with their local community, but, if they become confused and lost, whilst out and about, they are easily found. This helps provide security and reassurance, both for the person with dementia, and for their families, helping to prevent some of the more serious incidents, where a person with dementia has wandered, become lost and confused, and tragically died, before they have been found!

Moving forwards

Dementia is still misunderstood by much of society. Awareness is lacking, and there are still too few of us able to spread the word. We need help.

We need to mobilise the power of the media. Yes, films have been made about Iris Murdoch, and Margaret Thatcher. But, these are mainstream personalities, they are not your average Joe. Many soaps now focus on social and medical issues, but very few have the courage to handle the issue of dementia.

Whilst many on social media are doing a sterling job of raising the issue of dementia awareness, mainstream media covers little. Dementia is the silent, invisible condition, whose name must not be mentioned.

We need more TV programmes to take on board the issues of dementia. Soaps, whilst willing to challenge other medical issues, rarely touch on the issue of dementia. Documentaries are quite happy to deal with obesity, plastic surgery and a variety of psychological disorders, yet dementia is not a subject regularly aired.

We need to lobby our TV and radio stations, and encourage them to cover the subject of dementia. Let's spread the word!

As we continue to achieve greater longevity, we need to encourage a much better understanding and awareness about dementia, how it affects the lives of those with it, and the effect it has on friends and family.

Funding

In the UK, funding for dementia research represents just 6% of the resources available. Cancer, by comparison, receives 71%, and heart disease, 20%. Dementia costs the UK economy twice as much as cancer, so a clear imbalance exists, and will continue to do so, for as long as our populations continue to grow older, and live longer.

Dementia research is severely under-funded. Cancer research, as a high profile cause, is able to reach out through advertising, as is heart disease, yet dementia receives little exposure. Animal charities are able to command greater TV commercial air-time, than those charities supporting dementia research.

The future

Until we can sweep aside the stigma associated with dementia, increase awareness, and provide greater funding into research, for either a cure, or at the very least, a significant means to slow its progress. We can never create a truly dementia friendly society, or community.