Thursday, 12 December 2013

Dementia – put an end to the stigma through words, phrases and images

Now that the first G8 Dementia Summit has come to an end, I decided to take a look at one of the 12 points in the declaration, namely point 11:

Call upon civil society to continue and to enhance global efforts to reduce stigma, exclusion and fear.

Words and phrases

It was unfortunate, that in his summing up at the end of the summit, Secretary of State for Health, Jeremy Hunt, used the term, “the scourge of dementia”. Hardly helpful in reducing stigma or indeed fear. That the Prime Minister, David Cameron, referred to those living with dementia as “sufferers” was also unhelpful.

I have also seen other words such as epidemic and plague, being used to describe the increasing number of people developing dementia. And another, referring to dementia as the NHS time bomb! None of these words and phrases will help reduce stigma, allay fears or avoid exclusion.

Post summit, there is now the opportunity for politicians and the media to reconsider the vocabulary they use when referring to dementia. To find and use alternatives instead of the scaremongering, discriminatory and exclusive words and phrases highlighted above.

It is an unquestionable fact, that there is suffering at times for a person with dementia. However, suffering is only one aspect of the condition, there are also times of joy, laughter and smiles. In many circles it is now accepted that it is better to use the term “living with dementia” (as used by the BBC today, December 12 2013, in a news report about the summit), rather than “dementia sufferers”.

Unfortunately the BBC, on its website, also published the following statement ‘Dementia is described as a "global disaster waiting to happen" and the biggest health and care problem of a generation.’

Whilst this is undoubtedly true, such a statement is unhelpful. That dementia is a global issue goes without saying, but it is not yet, and should not be described as, a disaster. That dementia is currently and will continue to be a “problem” for some time, is also true – but it would be better described as a challenge, rather than a problem, in light of the summit, that is what it is, and the G8 nations must rise to that challenge.

We need to look to the future, a future that will hopefully be brighter for those who are yet to develop dementia. We need to be positive, we need to think, talk, act and write positively. We need to change the vocabulary used when referring to dementia.

Where possible, we should perhaps try to avoid the word disease - to many this sounds “infectious” - dementia is not a transmittable condition. Generally, we now refer to Alzheimer’s disease, as simply Alzheimer’s.

All forms of dementia are terrible, and at the moment and for the foreseeable future, incurable. Just as many forms of cancer were, until quite recently.

Images and words

Images currently used to portray dementia are often frightening, heart breaking and sometimes shocking.


The above image was accompanied by the following caption:
Loss of tissue in a demented brain compared with a healthy one

Here we have two problems, the image of a “shrunken” brain is frightening enough, and although a true depiction of what can happen, the use of the word “demented” is unforgivable! Yes, demented, using its secondary definition can mean “affected by dementia”, but its primary definition - the one understood by most people - is “mad or insane”! We need to approach these matters in layman’s terms, and not terms that might be used by medical professionals.

Images alone

For far too long, images used to portray those living with dementia, often show a person in the latter stages of the condition. Yet this stereotypical image does not fully portray the true facts, and indeed induces fear about dementia, and promotes stigma and exclusion. Whilst we must never hide the true facts about dementia, there are many stages, and these also need to be portrayed in order to illustrate - that at least for a while - it is possible to live well with dementia.

All too often, these images are of older people, completely ignoring the fact that dementia is not confined to them, nor is it part of the ageing process. Early onset dementia can affect younger people too.


One of my pet hates where images are used to portray dementia, is this:


Why? Because it gives the impression that every older person, must have dementia – which is most definitely not true!

The following images, taken by me, are neither stereotypical, nor frightening, even though they do portray an older person. They are happy images, images of someone living well with dementia - my Mum...



Tuesday, 10 December 2013

G8 Dementia Summit 2013 - my twelve wishes - and what the summit agreed...

The G8 Dementia Summit took place in London on December 11 2013, below is my wish list for those living with dementia and their carers/caregivers - compiled before the summit - accompanied by notes about what the summit agreed...

1 A cure
G8 is committed to finding a cure or disease modifying therapy by 2025

2 Early and full diagnosis
Summit highlighted importance of early diagnosis, and have set a target for 67% diagnosis rate by 2015

3 Much greater support for both the person living with dementia and their family carers/caregivers
Need for support for those with dementia and their carers/caregivers recognised

4 Better dementia awareness in the wider community, media and governments
G8 recognised need to eradicate stigma, and to share information about research, identifying strategic priority areas, including sharing initiatives of big data, for collaboration and cooperation

5 More funding for research into dementia and its many causes
G8 countries have agreed to significantly increase funding for research

6 More support for dementia charities - these charities receive fraction of that raised for cancer research and heart disease - yet dementia costs the UK economy more than cancer and heart disease combined (I'm playing my small part in this mammoth task here http://design4dementia.blogspot.co.uk/2013/11/dementia-awareness-wrist-bands.html)
G8 recognised the important role played by charities and voluntary organisations



7 More dementia friendly communities - ideally ALL communities to be dementia friendly
G8 to call upon all sectors to treat people affected by dementia with dignity and respect, and to call upon civil society to continue and to enhance global efforts to reduce stigma, exclusion and fear

8 More dementia specific wards in hospitals - no more placements on general wards where staff are not trained in dementia awareness
G8 recognised the need for better dementia care

9 Dementia awareness education for younger people in schools, including hands-on experience with those living with dementia
As point 7 - continue and enhance global efforts to reduce stigma, exclusion and fear

10 Dementia awareness training for all staff in Doctor's surgeries - including Doctors, to ensure earlier diagnosis and treatment where possible
As point 8 - the recognised need for better dementia care

11 More public facilities for those living with dementia - greater accessibility
As point 7 - all sectors to treat people affected by dementia with dignity and respect and to reduce stigma, exclusion and fear

12 Government representative solely responsible for dementia and all issues related to the condition, including those living with dementia and their carers/caregivers
UK to appoint a Global Dementia Innovation Envoy to draw together international expertise to stimulate innovation and to co-ordinate international efforts to attract new sources of finance, including exploring the possibility of developing a private and philanthropic fund to support global dementia innovation

Hopefully, one day, all of this will be a reality, until then, we have a long and difficult road to travel in order to raise awareness of this terrible condition, that still has no cure...

Thanks to this momentous summit, we may have just made the first step in the right direction, let it continue and gather momentum. It was also agreed that the next summit is to take place in the US on February 10 2015...

Wednesday, 27 November 2013

Caring for Mum – one year on – many bridges crossed – many more to go...

This time last year, I’d just become Mum’s full time caregiver. Prior to that, I’d been a sort of part time carer, but wasn’t willing to admit it. The big question - where am I now?

At first I took on the role of primary caregiver, working alongside agency carers to help Mum. I even thought, that when the time came, I’d become an agency carer myself. Not now - I’ve learned so much from my caring role, and thanks to social media, I have met so many wonderful people, and I now know I’d be wasting the creative skills I already have.

By profession, I’m not a caregiver, I’m a designer. I’ve learned to use my design and creative skills, over the last twelve months, in a way I had never expected. I’ve also learned that my many years experience as a reservist soldier, have also proved to be very useful.

Twelve months on, the use of creativity in my caring role has increased, caring has become a reason to express further creativity, rather than suppressing it – something I would not have believed possible, just a year ago.

Military training has also been useful, facing adversity with confidence is difficult, and fighting for the rights of your caree, even more so – the army taught me not to be afraid, and face adversity without trepidation.

My beliefs are simple - I’m not religious, yet I believe in right and wrong. If you know you are right, stand your ground. If you know you are wrong, accept defeat with dignity, not humility. Be proud!

My blog has progressed over the last twelve months, and some of my earlier posts now seem quite naive, even to me. But, the blog serves as a history of my own journey, through what can only be described as the most difficult transition in my life.

My Mum - bless her - has been a guinea pig throughout all of this, and a very receptive one at that. As my caring role increased, and my creativity started to take over, Mum became the person with whom I tried out my various, sometimes hair-brained ideas. Fortunately, she enjoyed the experiences, and some are still in use to this day.

Her bedroom started as a simple, yet relatively bland, rectangular room. In the last year it has been transformed quite dramatically, initially using simple things like flowers and pictures, into what is now a dynamic mood enhancing environment, embracing everything that Mum likes.
Music, sounds, images, lights, textures and smells – a totally sensory environment, that can be adapted to her every mood, or to help calm her, when distressed.



Everything is chosen to enhance her sense of well being. Bedding is plain, but colourful, mainly pinks and purples – calming colours. No patterns are used, as these can cause confusion. Lighting is subdued, but colourful, along with a small full spectrum light, to help combat SAD, and, hopefully, maintain Circadian rhythms.

One of my early experiments is still in place, a digital photo frame used as a day/night clock, again to help maintain Circadian rhythms. The files have been free to download for quite some time, and at the last count, almost four hundred people, worldwide, have benefited from this simple, yet effective, system.



Another simple experiment was clothing. Mum spends most of her time in bed, yet rather than wearing traditional bedclothes, she wears kaftans. These are loose fitting, and are easy for carers to remove and replace. Unlike the classic, undignified hospital gown, kaftans are dignified, stylish, and just as easy to change. Most, being made of polyester, are also hygienic, easy to wash and dry, and are ideal as both bed wear and day wear.

Music plays an important role - music from Mum’s past, to popular classical style music by the likes of Andre Rieu. When watching an Andre Rieu concert, Mum becomes quite animated, and thoroughly enjoys herself. Later of an evening we may just sit and listen to music from the 1950s, which Mum finds relaxing, and is ideal as a preparation for sleep.

Feeding has undergone a number of experiments, from simple finger foods, to full blown meals. I have learned to prepare meals that are easy for her to eat, and although she can no longer eat such meals independently, they are tasty, and indeed home-made. Ready-meals, whilst essential for some who don’t have the same support as Mum, were ditched a long time ago. As for drinking, Mum now uses leak-proof sip cups, simply because she has a habit of just putting the cups down anywhere on her bed, and frequently upside-down. By maintaining a well balanced diet both for her, and for me for that matter, she no longer needs nutritional supplements.

Medication – when Mum first returned home from hospital, I tried to administer her pills with a drink. This proved to be difficult, as Mum has always had a problem swallowing pills. Pills are now administered with her breakfast – normally Weetabix with plenty of full-fat milk. Each pill is administered with a spoonful of well soaked Weetabix, and for the most part, this works very well.

Mum has, for the last year, been doubly incontinent. She has pads (diapers), which she wears all the time. When bowel movement is imminent, she needs to be hoisted on to the commode. The timing of this rarely coincides with a visit from one of the agency carers, so it is inevitably down to me, to get her on and off the commode, and make sure she is clean. The initial shock of having to carry out such a task has long gone – it is now just something I do.

Thanks to social media, I’m now in contact with many people who find themselves in similar situations, and not just in the UK, but around the world. I sometimes think of what it must have been like for carers in the days before we had such opportunities, and indeed what it must be like for older carers without internet access, or access to modern technology. Social media provides me with the opportunities to learn from others, share ideas, or just provide or receive advice and support. This ability to communicate with others has helped both me and Mum.

One year on, I’m now in a place I never expected to be, yet the experience has given me the motivation to help others like myself, and those people living with dementia, in any way I can. To use my former skills, in a new, and previously unexpected way, to help improve the quality of life for those living with dementia, and to help make the roles of their carers more manageable, and more rewarding.

My journey so far, has taught me many valuable things. By using my creative skills, I have been able to create a sensory environment for Mum, and the pleasure she gets from it all, fills me with joy. It is this joy, through adversity, that I’d like to share with as many others as I can.

Where I will be in another year? I just don’t know. I’m not yet in a position to be able to plan that far ahead. In fact, at the moment, I just take each day as it comes, and treasure every moment of joy and laughter...

Sunday, 17 November 2013

Sensory lighting and mood effects for dementia

Why now is a good time to create a sensory room...

We know about the use of sensory rooms for children with special needs - however, such sensory rooms are also useful for people living with dementia.

There is a whole host of different products available, which can be used to create your very own sensory room. I’m currently trying out a number of products to create such a room for Mum, in her own bedroom.

Mood DVDs



A simple and easy start is to purchase one of the many mood DVDs available. These provide a variety of calming videos, combined with either natural sounds or music, or in some cases, both, and help set the mood. There are a variety of scenes available, from a crackling fire, mountain creek, waves lapping on a beach, tropical aquarium, waterfalls and even fireworks. The key aspect is the combination of calming scenes along with appropriate music.There are even DVDs available for a specific time of the year – Christmas – with seasonal scenes and Christmas carols and music.

Two DVDs, specially developed to help relax children and adults with a range of conditions including dementia, Alzheimer's, autism and Down's syndrome, are available here http://www.asenseofcalm.com/engine/shop/index.html

Mood and relaxation CDs are also available, these of course don’t offer the visual stimulation provided by the DVDs.

Colour change lighting



You could consider colour changing mood lighting. A variety of LED bulbs are available, some with remote controls, to change the colour sequences and to brighten or dim the light. Once again, these can be used in conjunction with music to create a calming effect, and also in conjunction with other forms of visual stimulation. At this time of year, take the opportunity to look out for colour changing Christmas lights and decorations.

Image projection



Aside from the classic rotating mirror ball scattering a myriad of moving points of light around a room, there are a number of different projection devices available, one of the most common being the home planetarium. Unfortunately some of these devices are not quite as good as they at first appear. The image is often blurred, and the room has to be quite dark for the effect to be fully appreciated.



There are, however, other devices, that are not planetariums in the true sense, but produce an effect similar to the night sky, with moving stars, shooting stars and cloud nebulae - others re-create the effect of light under water refracted by the gentle waves on the surface, and some even play sounds or music. These devices vary considerably in price, and even some of the more expensive ones, are not that good.

I've now received the Laser Twilight projector (as seen in the photo above), and have had a chance to try it out. Being a Class 1 laser product, the green "stars" are quite bright, and are clearly visible in daylight, the blue "cloud nebula", is a little dimmer, but still visible under ambient light. The "stars" move around in different directions, some moving faster than others, and the "cloud nebula" shimmers, and changes shape. The "stars" and "cloud nebula" can be displayed together, or independently. If this is the type of effect you'd like to achieve, then I would recommend the Laser Twighlight.

Daylight lighting



Many people suffer from Seasonally Affective Disorder (SAD), and the same can be true for those living with dementia. Full spectrum lighting is a great way to help combat such disorders, and although some SAD lighting can be quite expensive, it is also possible to adapt a fairly standard light fitting - with the use of full spectrum bulbs or tubes (search for “full spectrum” lighting instead of SAD lighting). The use of full spectrum lighting can help restore a person’s natural Circadian rhythm.

For Mum, I’m currently using a small, multi-LED full spectrum light, that clips to her bed – it is low voltage, does not get hot, and is therefore safe. Full spectrum lighting is not just beneficial to humans - as the keeper of both a budgie and a small parrot - I also use avian full spectrum lighting for my birds.

Aromatherapy



Smell is one of the senses often forgotten when we think of a sensory environment, yet it is just as important as the other senses when it comes to the sense of wellbeing. I am not of course advocating that we use a plethora of scented tea-lights, and all the dangers they entail. There are, however, small battery operated tea-lights, which give the effect of real candles. These, used in conjunction with plug-in or automated spray fresheners, or scented potpourri, can create the same effect, and are much safer.

As with everything else, experiment. Older people may find comfort in smells from their past, when they were young, or when they were children – from the smell of rose water to carbolic, from lavender bouquets to mothballs, even the smell of a newly extinguished match – any of these, and many more, may help re-awaken long forgotten memories.

Other lighting and sensory ideas



There are of course many different forms of lighting that can help with visual stimulation, the classic lava lamp, colour changing bubble tubes and glitter candles, colour changing LED and fibre-optic trees and rope lights, are just a few.




In Mum’s room, there is a gantry hoist – one of the upright supports has had artificial ivy trailed up it, to break-up the solid, uncompromising appearance of the support. At Christmas, artificial fir garlands and lights are added, the support, becomes a Christmas tree.

Whichever way you choose to create a sensory room, the key word is experimentation. Not all of these devices and solutions will work for everyone - it is simply a case of trying different ideas until you find the ones that work.

In the run-up to Christmas, a much wider range of colour changing lights and sensory devices become readily available, so Christmas time is the ideal time for experimentation – after all, if they don’t work for the person they are intended for, they can still be used as Christmas decorations.

For Mum, and for me, it is relatively easy, as I know the type of music she likes, and that she likes colourful lighting, and watching scenes that are calming and relaxing. As I write this, she is listening to the classical music tracks accompanying scenes of tropical fish swimming in an aquarium.

Just found these too...



I've just discovered some USB speakers, ideal for use with iPods, MP3 players, tablets and laptops, although with a little technical know-how, they can also be connected to TVs, DVD and Blue-Ray players. They're ideal when used in conjunction with music. When in use, the speakers create illuminated jets of water in time with the music - yet another wonderful sensory experience.

Latest products tested (added 5 April 2014)...

As this is an on going project, I'm always on the look out for new sensory ideas, the latest are two more lighting effects.

 
 
The first is an LED Crystal Ball, it has powerful LEDs and through the faceted clear plastic dome, the coloured light is scattered up the wall and over the ceiling. The ball can be set to seven different automatic displays, with speed adjustments, and two different sound activated displays to use when playing music. There are three models available, one three colour RGB, one is seven colour, and one that is also an mp3 player, using a USB stick or an SD card. The LEDs are bright enough to be seen in a well lit room. Compact in size, it measures just 19.5x19.5x19 centimetres.
 
 
The second is a small, two colour, red and green, laser projector. This projects hundreds of laser "stars" in ever changing patterns, complete with a speed adjustment for the pattern changes. This particular laser projector is also quite bright, and can be used quite successfully in a well lit room. As with the LED Crystal Ball, the laser projector also has a sound activated mode, and responds well to music. Its compact size measures just 13x9.2x5.2 centimetres.
 
Both the LED Crystal Ball and the laser projector can be purchased in the UK for less than £20 each.


Friday, 8 November 2013

Book review – Beyond my Control

why the health and social care system need not have failed my mother
by Suzan Collins



For those concerned about the care and welfare of an older loved one, or indeed older people in general, this book is at times, a very personal and extremely emotional read.

From my own perspective...

Having, in 2012, experienced some of the faults and failures, of health and social care services in England - involving my own Mother’s wrongful pre-admission diagnosis, three week stay, and difficult discharge from our local hospital, I was particularly interested to read about someone else’s experiences. Fortunately, my Mother returned home, and I became her full-time carer. Sometimes, this isn’t always the case...

Suzan’s story...

Suzan takes us through her, and her family’s, personal, very private, often difficult, and sometimes extremely emotionally charged journey - a journey experienced by them and their Mother, thanks to an incident at their Mother’s care home, that resulted in a hospital admission, for both a broken ankle and fractured femur.

What happened during the next few months - is truly shocking...

Failures by the care home and its staff, in duty of care, and the failure to record and report the incident, along with conflicting accounts of what actually happened to cause such injuries, remain unresolved.

Failures by the hospital, not only in their duty of care, but dignity, respect, record keeping, the administration of controlled medicines, and the attitude of staff towards both patients and family members, is frightening.

During this incredibly difficult time, they had to deal with the unexpected death of a close family member, and long journeys, by car or train, from the east coast to the west coast, in order to visit their increasingly ill Mother.

Suzan has 33 years experience in both health and social care, but none of this would be of any help to her Mother - time after time the family’s requests were either ignored, or not acted upon. Nothing they did would help.

My feelings...

Being a carer for my Mother, I have to admit, that at times, I was in tears as I read about the unfolding events and crises that occurred during the weeks and months, of Suzan’s Mother’s stay in hospital. It was a journey I could very definitely relate to. Some of it, a journey I have yet to make. A journey, I sincerely hope, will not be as difficult and distressing, as the one experienced by Suzan and her family.

Suzan’s mission...

Suzan now has a mission to try to improve health and social care for older people. To ensure that that care, is of the required standard, that staff are able to voice their concerns without redress, and that the current re-active system to address issues in health and social care services, becomes pro-active. In the hope that what happened to her Mother, will never happen again. A mission for which, being an unpaid family carer, I would give my wholehearted support.

For everyone interested in, or concerned about, the care of an older person, within health and social care services, not only in this country, but across the developed world, and beyond, this is - a must read!

Suzan Collins is a professional trainer and consultant in health and social care, working across the country. She assess staff performance in Health, Social Care and Management, delivers training, carries out pre-inspection (Care Quality Commission) compliance checks and advises on policies and procedures on subjects that include 'safeguarding' vulnerable people from harm and abuse. Suzan campaigns for better standards of health and social care in care/nursing homes, at home and in hospitals. She also campaigns for better support for staff providing this care. In addition, she is author of six, internationally selling open-learning workbooks, one of which is on Safeguarding Adults.

www.hammersmithbooks.co.uk

Monday, 4 November 2013

My not so usual day in the life of a full-time carer – calling NHS 111 in the early hours of the morning

Although the day started as normal, the following 24 hours were to prove somewhat different. Mum was fine during the day, but gradually became a little more confused in the evening. This often occurs just before a bowel movement.

Throughout the evening, I continued check to see if the commode was needed, and as is often the case, it was finally required at around 03:30 in the morning. As Mum can’t get out of bed by herself, she has to be hoisted onto the commode. Whilst on the commode, she became more vague and confused, and was trying to retch, but producing nothing.

Once Mum had finished with the commode, and I had cleaned her and hoisted her back on to the bed, it was clear that she may need a doctor to come and see her, I suspected it might be a UTI. I have a tub of Urine Reagent Strips, and was able to carry out a test. Whilst the test was negative for leukocytes, it was positive for blood, another possible sign of a UTI, she's had a history of occasional UTIs since late 2012.



Fairly recently in the UK, the National Health Service (NHS) introduced the 111 service for non-emergency medical calls. Often criticised for its poor service, I was able to put it to the test.

I called the service at 04:26 in the morning, and after answering the usual computer generated questions, and saying I thought it might be a UTI, I was informed that a clinician would call me back. The call-back came 17 minutes later, after being asked pretty much the same questions again, I was asked to check Mum’s blood glucose level - it was raised at 8.8 mmol/L (158 mg/dl). The clinician agreed that a doctor should be sent to see Mum, but that it could take up to two hours. I then had to wait for the doctor to call me.

I was called at around 05:03, and asked what the symptoms were, the doctor told me he’d be round as soon as possible.



He arrived at 05:55, and carried out the usual checks, temperature 37 °C (98.6 °F), listened to her chest, and asked her if she had any pain. He then asked me how easy it would be to get a urine sample, I explained it would be difficult, but that I had managed to use a test strip, and was able to tell him the results.

He agreed that it was quite likely to be a UTI, and prescribed the antibiotic Trimethoprim, to be taken twice a day, for seven days.

By the time the doctor left, it was almost exactly two hours since I made the initial call – so I can’t really complain. He also had the Trimethoprim with him, so no need for a prescription and no need for a trip to the pharmacy. Here in West Sussex, the 111 service seems to be operating efficiently, at least in this case.

The down side, and nothing to do with 111, a sleepless night for me - one of the joys in the life of a full-time carer!!

Friday, 1 November 2013

Salisbury NHS Foundation Trust sells own brand moisturising cream


In 2012, Salisbury NHS Foundation Trust launched its own moisturising cream under the brand My Trusty Little Sunflower Cream®. It is based on a formula developed at Salisbury District Hospital over twenty years ago.

Developed with the assistance of clinical scientists and the hospital pharmacy department, it proved popular with patients, many of whom requested that it be made available to buy after they’d been discharged. The cream was originally used to help with post-operative skin care in burns and plastic surgery.

In what was the first venture of its kind within the NHS, the Trust decided to market the cream to help raise additional funds to further improve patient care. The original formula has been adapted for the 21st Century, and is available in both unscented and lavender. 100% of the profits generated from sales, are re-invested into patient care.

The  cream, which contains 5% pure sunflower oil, is rich in essential fatty acids, free from perfume, lanolin, colour, and parabens, and is not tested on animals. It helps replace essential fatty acids, and improves the texture of skin. The scented version contains pure lavender essential oils.

The original cream, still manufactured at the hospital pharmacy, is available for purchase at Salisbury District Hospital.

My Trusty Little Sunflower Cream® is also available from the hospital, or can be purchased on-line from the website www.sunflowercream.com

Tuesday, 29 October 2013

My poem for Mum - living with dementia


Click image to enlarge
 

 
To find out more about the Purple Angel click http://www.purpleangel.org.uk

Book review - The Essential Guide to Avoiding Dementia

understanding the risks
by Mary Jordan


When I was asked to review this book, I was a little concerned about part of the wording of the title – “avoiding dementia”? Is that really possible?

Certainly maintaining a healthy lifestyle can help. But can it actually prevent dementia, or merely delay onset? As is very clearly stated in the book, dementia is not part of the ageing process, and that certain types of dementia can develop in younger people. In many cases dementia can be caused by other underlying conditions. Taking action to prevent or control these conditions, could well help to avoid dementia.

However, the book doesn’t just cover possible ways to avoid dementia, but also what to do if it is diagnosed. This is certainly helpful, both for the person with dementia, and their families.

Mary draws upon research carried out around the world, to illustrate how certain factors such as healthy lifestyles, exercise and diet, may help reduce the risk of dementia and cognitive decline. Other, less obvious factors that may also contribute positively towards avoidance are good levels of education, variety in lifestyle, social contacts and leisure pursuits. She also covers the effects of a number of factors which may increase the risks.

Where dementia is diagnosed, exercise again plays an important role, though from personal experience as a carer for my Mother, who has vascular dementia, and very limited mobility, this isn’t always possible. Maintaining a nutrient rich diet can also help, and the use of full-fat milk, eggs, cheese, butter, and oily fish on a regular basis is encouraged. Reading this was heartening, as when my Mother was discharged from hospital in late 2012, having suffered a serious UTI, it was my intention to wean her off the food supplements she had been prescribed. This I did gradually, and she now enjoys the same, non-processed, hearty meals as me.

The effect of a head or brain trauma as a contributory factor is also investigated, as is stress, psychological trauma and even PTSD, all of which appear to increase the risk of developing dementia. Illnesses and diseases - such as heart and vascular disease and diabetes, along with many others - can also be a trigger. Treatment and control of these conditions may again help prevent, or at least delay the onset of dementia.

The last chapter covers actions to be taken when someone is worried they may be developing dementia. These range from what to do and who to see for diagnosis, and how to maintain as normal a lifestyle as possible after diagnosis. The chapter closes with a simple statement, perfect for both the person living with dementia and their family – “get the most out of life everyday”. A wonderful piece of advice, and something I personally follow on a daily basis. Enjoy every moment, every smile, share the laughter, and share the journey.

Also included is a glossary of terms used, and an appendix containing a description of different parts of the brain, how they may be affected by dementia, and what some of the symptoms and effects might be.

For those wanting to know more about dementia, the underlying causes, how to try to avoid it, or how to live with it, this book is certainly a good reference point. Whilst not everyone will develop dementia, and some may well avoid it using the advice provided, some may not - there is however, sufficient information to be of use to those who are unfortunate enough to be diagnosed with the condition, and also to help their families and carers acquire a greater knowledge and understanding about dementia, and help their loved one lead as normal a life as possible.


Mary Jordan has experience on both sides of dementia care - as a carer to friends and relatives, and professionally through her work with a national charity; she daily supports people with a diagnosis of dementia, together with their carers. For many years she worked for the National Health Service and has also served in the Armed Forces. In addition to articles and papers published in medical, nursing and social care journals, and general magazines, Mary is also known for her books The Essential Carer's Guide, The Fundholder's Handbook and the award winning End of Life: the Essential Guide to Caring.

www.hammersmithbooks.co.uk

Saturday, 26 October 2013

Caring for Mum - my story - blogtalkradio interview with Denise Brown

I took part as a guest on blogtalkradio with Denise Brown from Chicago, Illinois, in October 2013. Denise runs http://www.caregiving.com/ in the States.


We talked about my caring role for my Mum who has vascular dementia. The interview is available at the link below

http://www.blogtalkradio.com/caregiving/2013/10/15/caring-for-mom

Worthing - Working towards a dementia friendly community

Tuesday 22 October 2013, saw the first meeting of the Worthing Area Dementia Open Forum. Unfortunately, due to my caring duties, I was unable to attend. I did however contact the organisers beforehand, asking to be kept up to date on any developments.

I now have the minutes from the meeting, and will discuss here some of the matters arising.

35 people attended the forum including representatives from the Alzheimer’s Society http://www.alzheimers.org.uk/, Guild Care http://www.guildcare.org/ and West Sussex County Council http://www.westsussex.gov.uk/ along with carers, people living with dementia and health and social care professionals.

The opportunity for people to become Dementia Friends or Dementia Champions was raised. Dementia Friends http://www.dementiafriends.org.uk/ is an initiative funded by the UK government and run by the Alzheimer’s Society, with the primary aim of creating dementia friendly communities.

Some of the issues raised at the meeting included:

Doctors (GPs)
From personal experience many GPs and their staff, have little understanding of dementia, yet for many, GP’s surgeries are the first point of contact in the UK health care system. Improved dementia awareness in GP’s surgeries should be made a priority.

Information about services available
A need was identified for printed information about all of the local services available to those living with dementia and their carers. This information would of course have to be kept up to date, all too often such information is out of date with incorrect contact details, or signposting services no longer available.

There is certainly quite a lot of printed information available for carers, including the West Sussex Care Guide, which contains useful information and a directory of services available.

Future representatives from other organisations
Suggestions were put forward for representatives from other local organisations to attend future forum meetings, these included; a GP lead for dementia, the Salvation Army, Carers Trust, local theatres, local cinemas, the Red Cross, ICIS (part of the Helplines Partnership finding help for people when times are difficult), local leisure centres, coffee shops, the Rotary Club and the local Freemasons.

Being from a military background, I’d also add SSAFA and The Royal British Legion, to represent ex-service people and their families.

Another suggestion from a Twitter friend would be Sussex Police, who are already supportive and well informed about dementia.

From my own point of view, I think the more local organisations and businesses represented the better. It is important that employers are aware of the difficulties sometimes faced by working carers. It was such a lack of understanding and flexibility that caused me to give up working, in order to care for my Mum.

Dementia friendly shops and taxis
Shops and taxis identified as dementia friendly to display stickers to let people know. A similar scheme is currently operating in Torbay, under the Torbay Dementia Action Alliance http://tdaa.co.uk/ , encouraged by the inspirational Norman McNamara (Norrms) and his wife Elaine. Norrms has Lewy Body dementia. As part of this alliance, and inspired by Norrms, the Purple Angel http://www.purpleangel.org.uk/ has been adopted as a symbol of hope for all those living with dementia. In fact, the Purple Angel has been adopted in many places around the world.

Perhaps Worthing should do the same.

The use of Social Media
Although the minutes confine this to “spreading the word, for things such as meetings”, many of us who regularly tweet on Twitter, are already doing it! We “spread the word” about dementia across the world. I could list a whole raft of people I’ve met on Twitter “spreading the word”, so for anyone interested, it would probably be easier to give my Twitter name, @ZkidooKreativ, so anyone can then discover the many who are indeed “spreading the word”, including Norrms!

Carer recognition
Encouraging services and business to recognise that someone is a carer - this is certainly a problem, many of the businesses and services carers have to deal with, are completely unaware of what being a carer really is like. This also, as already mentioned, involves carers who are also employees. Refreshingly, I recently took part in an on-line survey for Argos, the section asking about employment actually listed “full-time carer” – well done Argos! At least one company recognises us!

Unfortunately other companies don’t! Very recently I was in contact with Sky, due to problems with my phone line and broadband. Whilst trying to be helpful in resolving the issue, I was kept on the telephone for over an hour, even though Sky had been informed in an email regarding the same matter, that I WAS a full-time carer. Had my Mum needed any help during this time, which fortunately she didn’t, I would have had difficulty in explaining to the Sky representative that they would have to call back. Why? Because the representative was totally unaware of my carer status.

Singing for memory groups
Many of us who care for someone living with dementia, know of the value of music as a tool both for the memory, and for helping to calm and reassure. I won’t add anything further here, as I have already written an earlier post on the subject – http://design4dementia.blogspot.co.uk/2013/07/dementia-music-and-emotions.html

Men in Sheds
Men in Sheds was an AgeUK pilot project that supported older men who wanted to get together, share and learn new skills - all in the welcoming space of a ‘Shed’. There are now several similar groups around the country.

Men In Sheds Worthing http://meninshedsworthing.org.uk/ is about a larger version of the typical man’s shed in the garden, a place where he feels at home and pursues practical interests without worrying about making a mess. Men In Sheds offers this to a group of men where members share the tools and resources they need to work on projects of their own choosing at their own pace and in a safe, friendly and inclusive venue. It is a place of skill-sharing and informal learning, of individual pursuits and community projects, of purpose, achievement and social interaction. A place of leisure where men come together to work.

The activities usually involve making or mending in wood (e.g. carpentry, wood turning, carving, and furniture renovation) and may include activities as varied as tool renovation and upholstery. Reclamation, reuse and restoration feature strongly in what they do. The essence of Men In Sheds is not a building, which some don’t have, but the network of relationships between the members.

I have to admit, it’s probably not a group I’d join myself, but I am sure it proves helpful to many.

The availability of information about dementia
There is of course a plethora of information about dementia on the internet, from a variety of different sources, some reliable and some not so. The Alzheimer’s Society http://www.alzheimers.org.uk/ has quite a lot of information on its website, but something highlighted at the meeting was the simple fact that the Alzheimer’s Society doesn’t make it clear enough that its services are for all types of dementia and not just Alzheimer’s Disease.

At the time of Mum’s diagnosis (Vascular Dementia), I was completely unaware that the Alzheimer’s Society did indeed cater for all types of dementia.

Whilst Alzheimer’s is the most common form of dementia, there are many other forms of the condition. Across the world, many organisations use the umbrella term of Alzheimer’s to identify themselves. This, unfortunately, is often unhelpful, especially in the early days of diagnosis, both for those with other forms of dementia, and their carers. A simple name change could help, such as the Alzheimer’s and Dementia Society, instead of the Alzheimer’s Society, in the case of the UK organisation. Just a thought.

Local on-line dementia forum
Whilst this could work, it would rely on a reasonable uptake by potential users. Local forums can often exist with no-one posting on them for months at a time. There are however national forums already in existence, where threads can be created for a more local feel, and where people from a specific area or region can share thoughts and information. Generally, sharing is pretty much on a national basis, giving access to far more information, and sharing experiences with a greater number of people who find themselves in similar situations.

Personally, I use the Carers UK Forum http://forum.carersuk.org/ regularly, and whilst not all members are carers for someone living with dementia, quite a few are, and there is a specific group of threads dedicated to dementia.

The Alzheimer’s Society also has its own on-line forum Talking Point http://forum.alzheimers.org.uk/forum.php . I’ve posted there a few times as well.

Educating younger people about dementia
This is certainly an area that should be given serious consideration, and it has recently attracted considerable interest on a number of Twitter chats. I won’t go into any great detail here as a Twitter friend has already covered much of it at http://karims3d.com/2013/10/17/dementia-friendly-schools-%e2%96%b7-a-primer-to-anti-stigma-campaigns/

Gathering momentum
Whilst this was the first meeting of its kind in the Worthing area, it already indicates that there is a hint of what could hopefully be a strong movement to create a dementia friendly community. Let’s hope it continues and gathers momentum.

Friday, 18 October 2013

Dying with dignity

This is a subject close to my heart. I experienced death with dignity in 1994, when my Father lost his long battle with cancer. Right up until his last few days, he fought against multiple myeloma and cancer of the oesophagus.

After diagnosis, and a little research, Mum and I knew Dad had a maximum of two years to live. Yes he smoked, hence cancer of the oesophagus. The multiple myeloma, his primary cancer, was a different matter - no-one knew what had caused that. Some specialists even asked if he’d been anywhere near some of the atomic detonations during the 1950s. He’d been a soldier during that time, right up until the early 70s. As far as we knew, he hadn’t, and that’s what he said too.

Although Dad slowly became visibly weaker during his last few months, he was still active, and through the pain, still tried to maintain as normal a life as possible. As a proud man, it was beyond him to ask for help, unless it was really necessary.

Like my Father, I also chose a role in the military, albeit in my case, part-time. I joined what is known as the Territorial Army here in the UK, very similar to the US National Guard. On returning home to my parents’ house after a training evening, I found Mum struggling to help Dad to the toilet. She wasn’t strong enough, and was relieved at my arrival.

My Dad looked at me and said “I’m knackered son”, he was clearly in distress, and needed assistance in order to get to the toilet, which I was able help him do.

By the following morning, a Thursday, it was clear that his life was coming to an end, the words he spoke to me the night before, were the last I would hear.

He slipped into a coma, and his body slowly started to shut down.

The Doctor came to visit that day, and said quite clearly that it wouldn’t be long now. He also left a large bottle of diamorphine, in order to relieve any pain, stating that we should administer a dose as and when needed.

For most of the day, Dad lay in bed peacefully unconscious. By the evening however, things began to change, his breathing became shallower, and he lost all bowel and urinary control. Thanks to a neighbour who worked in a care home, we were able to keep him clean, and to a degree, comfortable.
Diamorphine was administered throughout the night, when needed, as he slowly began to slip away.
The following morning, his sister came to visit him, and sat with him for about an hour.

After I’d taken her home, a short half mile drive away. I went back, and checked on Dad. His pulse was slow and weak, and his breathing shallow. I called Mum in, and said that I thought he was about to go.

As we stood there with him, I felt his last two pulses, and then he left us. He left this world in the company of the two people he cared about most - Me and Mum. We were with him at the very end. Just the way he would have wanted it to be. That’s death with dignity. He didn’t want his sister there - and just hung on until the time was right.

Yes it hurt, but in a strange way, it wasn’t just a relief for Dad. I felt relieved. His suffering was over, yet there was something else. The moment of death and sharing it with him made it so much easier to accept. Mum and I had a big hug, shed a few tears. But we knew he was now at peace, and would suffer no more. We had shared in his life, and at that vital moment we shared in his death. Something I can still celebrate. Yes, celebrate!

My Dad died in such a way that it made it easier for Mum and me to accept it, and to remember, still vividly, the moment he passed away.

That brings me on to the next part of this post – assisted dying. Should it, or should it not be legalised?

Personally, I have pretty strong views on this subject, and that is thanks to my Dad.

As stated earlier, we were able to administer diamorphine to Dad, as and when he needed it, in order to relieve pain. That is what we did. Yet, diamorphine can have a secondary effect - it can also assist in the dying process. This secondary, or double effect, is legal in many countries around the world. So long as pain relief is the primary aim, if death is a “side effect” then that’s acceptable.

There are of course other methods of “accelerating” death, many methods of which are also regarded as perfectly legal in many countries. Many care pathways, including the somewhat controversial Liverpool Pathway here in the UK, allow for the withdrawal of vital medicines, fluids and nutrients when someone is judged to be approaching end of life, or that the person concerned is in a vegetive state. Often the problem here is who actually makes the judgment. Clearly, the patient by this time - is no longer able to make that decision for themselves.

As individuals, as long as we’re able to make such a decision, whether we live or die, should be our choice. If assisted dying was legalised it would enable perfectly healthy people to state quite categorically what should happen if they were suddenly, through illness, or accident, placed in a situation where their life would be unsustainable without extreme medical intervention.

Here, I’m not talking of life changing events, where initially the casualty may feel they have lost the will to live because the psychological trauma of dealing with a life changing injury is too much. This is about whether there is a life to be lived or not. A life without pain, a life without suffering, a life that is not cruel. Where someone feels their life, through such traumatic events has become unbearable, and unliveable, they should at least be given an option, a simple yes or no scenario. Their personal choice will be based around many factors, and any conclusions or choices should not be taken lightly.

Life is a gift, but sometimes that gift can be too much to bear. Many people take their own lives each year, for a whole variety of reasons. Able bodied people can take their own lives whenever they want. Why condemn someone who feels life is no longer worth living, yet through disability or inability through mental or physical factors, is unable, thanks to outdated laws, to make that decision.

For some, death is a release. A release from the suffering of this world, a relief from pain. Many of us are strong enough to face many things, including death. A rifle barrel in your face could mean impending death – how would you deal with it? Some would fight, some would collapse in fright, yet others would calmly accept the outcome.

Death is never far away, and those close to it should be given the choice of whether they wish to continue to live, or not.

Personally, I believe that where a person is at the end of life, and that life has now become unbearable, through pain and suffering, they should be allowed to make that choice. Or, be given the choice to make that decision in advance.

We have donor cards, why not have an end of life card, stating quite categorically that person’s wishes when that time comes? It can still have an opt out clause, if needed. This would help alleviate many problems currently encountered between relatives and physicians, when deciding which treatments to continue and which to withhold. Even without legalised assisted dying, this would still work with care pathways and double effect scenarios.

Just a thought!

Tuesday, 8 October 2013

Stigma and the male caregiver! Time to ignore and overcome...

OK - in at the deep end - I care for my Mum, I’m male, and single – suddenly, society thinks this is wrong! Why?

Let’s get straight to the point, I’m unmarried! Therefore elements of society believe I must be gay! (No offence to any gay readers intended).

Yet ask one of the agency carers about a subject I brought up this afternoon – when, in the past, I visited Amsterdam’s red light district, or Hamburg’s Reeperbahn. Sorry to be so forthright, but some people would label me as being gay, which I’m not, though there are many gay men, and indeed straight men, who would undoubtedly carry out the same caring role as me.

This is not about sexuality, or discriminating against people who care. This is about why we care. We care, because we love – period! Don't judge us on sexuality, or the reason why we choose to care. That is our choice - a choice we are free to make.

My relationship with my Mother has always been close, but such a relationship doesn’t define anyone’s sexuality. Society however seems to have a different view. A view which, until recently, also affected me. I wouldn’t admit to being a full-time caregiver for my Mum, because I was afraid of how I would be judged.

Things have changed!

Why? Because I’m proud, and happy to be so. I’m now confident enough to admit to others what I do, because I’m proud to be an advocate for my Mum, myself, and others in similar circumstances. Being a caregiver to someone you love, is possibly, aside from having a baby, one of the most rewarding roles you will ever encounter in life. Ultimately, because of the final outcome, it can also be one of the most painful.

My life has been varied, and by comparison to others, exciting. My Dad was in the army, we lived in Germany for much of my younger life, including four years in West Berlin, at the height of the Cold War, and Northern Ireland, at the start of the troubles.

I also served for twenty six years in the Territorial Army (UK equivalent of the US National Guard).

Taking all of this into consideration, why are male caregivers regarded in such a way?

Caregiving has for far too long been regarded as a female role. Everyone has the capability to care, regardless of gender - nature only too clearly proves this - from the humble male stickleback, caring for his offspring, to the big apes, where the alpha male not only continues his genetic strengths, but also protects his hareem and offspring.

Role sharing within human society has existed since the days of hunter gatherers - the industrial revolution changed much of that. The male became the breadwinner, whilst the female stayed at home, to care for the family – very much a recent concept, in the course of human history.

Too many of us are now willing to place the care of elderly parents in the hands of others, rather than doing it for ourselves. Why?

In many ways, society dictates that they should.

Whilst as a single man with no dependents, it is easy for me to become a caregiver to my Mother. The same is not the case for a married man, with a family, wishing to do the same. This is wrong - we all have the right to care. To care, for those we love, regardless of who they are.

As we get older, and as more of us survive into our eighties, nineties and beyond - there will be an increased need for family caregivers, male or female. Age does not discriminate, nor should society’s perception of caregivers!

Whether you're a male or female caregiver, it's time to speak out! Tell the world we care! We care for the ones who once cared for us! We care for those who, because of an act of nature, were never given the opportunity to care in the first place, or to make that choice. We care - period!

Once a caregiver, always a caregiver!

Saturday, 21 September 2013

Review: Day clocks for people living with dementia

On my other blog about creating a day clock for dementia using a digital photo frame, there have been quite a few comments regarding day clocks for people living with dementia. I’d therefore like to take the opportunity to review some of the various types of day clocks available.

The concept of the day clock is nothing new. Long case clocks (grandfather clocks) have had sun and moon phases for quite some time, and the basis of a day clock is exactly that.


Before we had clocks, we had sundials, from a basic stick or stone in the ground, to the more complex gnomon based variety. These would give a fairly accurate indication of the time of day, whilst the sun was visible – morning, afternoon and evening. Night was quite naturally the absence of the sun altogether.



Thus the entire concept of the day clock can be traced back to when man first pushed a stick into the ground, and started to measure the time of day, from the shadows cast by the sun.


With the likes of Stonehenge, the whole concept took on a completely different purpose, but it would still measure time.


Night and day is quite easy to define (unless you are located nearer to the North or South poles, and within the Arctic or Antarctic circles), although each part of the day lengthens or shortens, depending upon the time of the year.

We are all used to the concept of day and night, and have been for millions of years. Yet, within our modern world, with electric lighting, we can extend or shorten these periods to suit our needs. For someone living with dementia, this can cause problems.

Therefore another way of indicating the time and period of the day, may, and I reiterate the word MAY, be helpful.

There are a number of day clocks aimed at people living with dementia, including my own free version for use with digital photo frames. The principle is similar in all cases.

There are analogue versions, some of which are essentially a modern version of the long case clock, showing night and day phases. These are easily recognisable, but their usefulness is questionable, especially as the clock face, unless illuminated, is not visible at night.

 


Other analogue versions have only one hand, and rotate on a weekly basis, showing the day of the week, and the day subdivided, in most cases, into day and night. The problem with these is that they have to be “learned”, they don’t follow the basics of a normal analogue clock. Again their usefulness is questionable.


Then there are analogue “digital” clocks with an alphanumeric display, showing time, day and often month. These are essentially analogue “digital” clocks re-marketed as dementia clocks, in order to try to enter a perceived, yet un-researched, market.




There are also true digital versions of the same clocks, either with an LED or LCD display, yet again, these are standard clocks remarketed to try to enter the “dementia” market.

Other day clocks


The first I will mention is that developed by BIME. Essentially, like my version, it is based upon a digital photo frame, in this case adapted to be used specifically as a dementia day clock. The display is basic, with a simple text message such as “Now it’s Tuesday Afternoon”, in white on a black background. BIME claims that “Now it’s” proved to be the best understood message.



Feedback from my own blog, would tend to indicate that “Now it’s” or as in my version “It is now” are actually superfluous, so I will be producing a simpler set of files in the very near future.

Another clock, somewhat dubiously marketed as a clock suitable for people living with dementia (DayClox), is in essence a standard digital clock, based upon a digital photo frame, and providing no further information than that found on any other standard digital or indeed analogue clock.



Finally, there are two further versions. My own, and that of Zeezap. Both use text and images to indicate the period of the day. My own uses, and earlier versions of Zeezap used, real images to portray the period of the day. Zeezap however, has now moved to simplistic, almost nursery type images, spoiled by the overuse of Photoshop effects in order to get the message across.



I’m trying not to be overcritical of Zeezap, in favour of my own system, however, the use of all upper case letters decreases legibility of the message, especially for older people with visual impairment.



As a graphic designer, I’m only too aware of the importance of the use of upper and lower case lettering when it comes to legibility, and would refer to the designs of Jock Kinneir and Margaret Calvert for British motorway signs, where legibility at high speed was important. They used upper and lower case, a standard which, including the typeface, has since been adopted in many parts of the world.

 
 
Many claims have been made regarding day clocks for people living with dementia, and many of those clocks marketed as such can prove to be an expensive waste of time. My own version works for my Mother, and may indeed work for others.
 
If you are a carer/caregiver for someone living with dementia, then try one of these clocks by all means. It may well prove helpful, especially where there are cases of sun-downing. I would however recommend that a certain amount of experimentation is carried out first, especially before spending money on something that may prove to be totally useless. Not one person living with dementia is the same as another, however, the companies marketing these devices would have you believe otherwise.

Saturday, 7 September 2013

Dementia - eating and drinking

Many of us know how hard it can be, trying to persuade someone living with dementia to eat and drink sufficiently. It’s been quite a few months now since Mum came out of hospital after a serious UTI, but during those months, I’ve experimented with a wide variety of foods, from ready-meals to full blown home-cooked dishes.

The results have been quite conclusive, and ready-meals hardly feature at all. I’ve tried finger foods, but Mum is easily distracted, and tends not to eat as much as she should.

Knives and forks are out, as food ends up all over the place, and not in her mouth. Her co-ordination with any form of eating utensil is clumsy to say the least.

Persuading someone with dementia to drink is also a problem. The solution here is simple - foods with a high liquid content. Cereals, with plenty of milk, for breakfast, and soups or other high liquid content foods for lunch. I tend to opt for the higher fibre soups containing beans or lentils, although I also use Baxter’s Mediterranean tomato soup, which has a high tomato and vegetable content. Food with a higher fibre content, aids digestion, and helps to avoid constipation.

Heinz now produce a five bean version of baked beans, in their Snap Pots range, and these have proved very successful alongside soups. Beans, as we know, are high in protein and fibre, and the Heinz Snap Pots Five Beanz contain Kidney beans, Haricot, Pinto, Borlotti and Cannellini beans.

OK, so we’ve sorted breakfast and lunch, but what about dinner? After many months of experimenting, I’ve started to compile a list of home-cooked dishes that Mum will eat, with no problem. I have to add at this point, that due to co-ordination issues, I generally spoon feed.

Nasi Goreng

I have produced a concise list (more will be added later) of dishes that Mum will eat, with little or no encouragement. Wherever possible, I try to avoid the use of prescription food supplements such as Fortisip or Calogen. The dishes are varied, and quite cosmopolitan, offering a variety of ingredients and flavours. Thus far, the list consists of the following:

1. Cottage Pie – this is the one and only ready-meal to feature as, to be honest, it’s easier and cheaper in this form - served with a variety of fresh vegetables, primarily broccoli, spinach, cabbage or Brussels sprouts, and gravy.
2. Bangers (sausages) and mash, again with a variety of vegetables, and onion gravy.
3. Chilli con Carne with rice, and plenty of red kidney beans.
4. Spaghetti Bolognese, with added tomatoes and basil.
5. Bauernfruhstuck – Farmer’s Breakfast, a sort of German bubble and squeak, made up of diced potato, bacon or ham, onions, eggs and parsley.
6. Nasi Goreng – an Indonesian fried rice, containing meat (usually chicken, although, I often use bacon lardons), prawns, leeks and rice, using Sambal Oelek (Indonesian and Malay chilli sauce, although Thai Red Chilli sauce can be used as a substitute), topped with a fried egg.
7. Cheese and mushroom omelette.

Of course each individual has a personal taste and preference, but variety, as the saying goes “is the spice of life” (excuse the pun). Finding meals that are acceptable and enjoyable, as well as being nutritious is, of course, paramount.

By using meals that have a higher than average liquid content, helps overcome some of the drinking issues faced by care givers of those living with dementia. Without them realising, they are taking on more liquids, helping to counter their unwillingness to drink sufficient fluids.

Drinking is of course still to be encouraged, in order to avoid a variety of problems, including dehydration and potential UTIs. Again, it’s a matter of finding what they will and will not drink. Mum will often drink tea, but not always in sufficient quantities, she is, however, quite partial to apple juice and grape juice, so that helps. Ice cream (of the diabetic type if needed) and yoghurt are also useful for introducing extra fluids. Of the flavoured varieties of yoghurt, I generally favour the Raspberry flavour, as this tends to be higher in fibre than other flavours.

Getting someone living with dementia to eat properly can be difficult. Taking both nutrition and variety into consideration, and then experimenting can help both the caree and the caregiver. Mealtimes become less fraught and more enjoyable for both.

If you have other suggestions to offer, please feel free to share them here.

Thursday, 29 August 2013

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...

Tuesday, 20 August 2013

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!