Wednesday, 29 May 2013

What is dementia?

Reflecting after my daily blogging for UK Dementia Awareness Week 2013, and reviewing all of the coverage given to this campaign, it has struck me that whilst it has succeeded in getting more people talking about dementia, many of those who have embraced it are still searching for information, and that’s to say nothing of the millions of people who the campaign won’t have reached.

Many enquires I’ve had have focused on how to spot dementia in a loved one. Ask most people what dementia is and they will probably say memory problems (that I wrote about here), but it is often as much about behaviours and actions as it is about memory, and in some forms of dementia, memory problems are not a common symptom. It must also be remembered that many symptoms associated with dementia are also indicators for other illnesses and conditions, which must be excluded before an accurate diagnosis of dementia can be made.

Looking at the whole person is as important when we suspect dementia as it is at every stage of someone’s life with dementia. For example, your 80-year-old grandmother who forgets where she puts her keys occasionally but is otherwise looking after herself, and leading as active a life as possible, isn’t about to need 24/7 dementia nursing. She just forgets where she puts her keys sometimes. We can all do that regardless of our age.

I would say that gut instinct has a lot to do with understanding what is, and what isn’t, dementia. Looking back we knew that my dad was experiencing huge problems during the 10 years he went without a diagnosis of dementia, we just didn’t know that they were part of a long-term, terminal disease. Dad’s problems affected every area of his life, from his diet (which went from being balanced and healthy to very unhealthy and mixed up), to him not cleaning the house, not changing bedding, not washing regularly, not changing his clothes, and not caring about his appearance.

Whilst this was partly through forgetting, these were also things he expressed no interest in doing and had to be gently cajoled into. He would keep things like food and household items in unusual and unsuitable places. He became paranoid about security. He would go out unexpectedly and unprepared. He became reckless with money and failed to pay bills. He hallucinated and developed obsessions with people on television. He would pull out the phone line because he didn’t like the phone ringing. He would sit with the curtains drawn on a bright sunny day, and he stopped doing his garden (that he had always loved). The list is endless.

In my dad’s case these were all issues that he developed over a long period of time, that became progressively more severe, and all impacted directly on his health, wellbeing and quality of life. They were never trivial, occasional or reversible. Even when he was admitted to hospital, he very nearly ended up on the local railway line having got out of the ward and walked there in his pyjamas. Thankfully he was discovered by an off-duty nurse before he could have had a terrible accident.

Given that there are over 100 forms of dementia, you can imagine the plethora of symptoms, and for each particular form of dementia, each person can exhibit it differently. For example, I have met many people with vascular dementia, the form of dementia that my dad had, and I can honestly say that each person was very different in their presentation with the disease. Why? Because we are all unique, and dementia doesn’t change that. There is a reason for the saying, “When you’ve met one person with dementia, you’ve met one person with dementia.”

That is not to say that there aren’t some common themes, many of which are covered by the descriptions I’ve given of how my dad’s dementia manifested itself. I cannot tell you exactly what dementia may look like in someone that you know, but you may notice persistent changes in that person’s ability to:

  • Maintain their personal care (their appearance, hygiene, co-ordination of clothes etc).
  • Sequence tasks (like getting dressed in the right order, or making a drink correctly).
  • Operate simple household items or learn how to use new ones.
  • Losing, hiding or Put things away in their correct place (for example they may put their slippers in the fridge and their milk by the bed).
  • Maintain their diary (not attending appointments, failing to go to social events that they used to enjoy).
  • Maintain their financial/legal affairs (shopping, paying bills etc).
  • Orientate themselves (getting lost in otherwise familiar places, including at home. This can lead to wetting or soiling themselves if they cannot remember where the toilet is).
  • Communicate verbally (ie repetition).
  • Speak in a familiar language (reverting to a native language that they remember from childhood, or using foul/abusive language that they never previously uttered).
  • Regulate their speech or behaviour (for example going out not fully dressed or speaking inappropriately to strangers).
  • Read or write (losing concentration, misspelling or incoherent writing).

Your loved one may also experience:

  • Changes in appetite, food preferences or desire to eat/drink.
  • Seeing or hearing things and paranoia (perhaps accusing you or someone else of stealing).
  • Excessive walking (going out unprepared - perhaps not properly dressed - getting lost or looking for a place that they remember from many years ago).
  • Being disorientated in time (for example wanting to start their washing machine in the middle of the night), or living in a different reality (possibly believing  that they are in a different era or location).
  • Problems recognising faces that should be familiar.
  • Losing, hiding or hoarding objects or items (that belong to the person, or someone else)
  • An increasing need for reassurance (someone who was previously independent becoming clingy or losing confidence), or a need to be constantly reminded about things.
  • Altered sleeping patterns (sleeping more and/or at unusual times, or sleeping a lot less, often waking in the middle of the night or experiencing nightmares/dreams that they find troubling).
  • Changes in character, mood, emotions or personality (examples include aggression, anxiety, tearfulness or withdrawal).
  • The classic short-term memory problems that are so associated with most people’s understanding of dementia (long-term memory is often unaffected).
This list is by no means exhaustive, but it should give you an idea of some of the classic symptoms or situations that, in combination, may suggest your loved one is developing a form of dementia. As the disease progresses all of these symptoms would potentially become more severe, with increasing loss of functioning and communication. You may also notice other issues developing, like incontinence or swallowing problems.  If you are concerned, I wrote advice here on how to have a conversation about dementia with your loved one.

Until next time...

Beth x







You can follow me on Twitter: @bethyb1886


PLEASE NOTE: THIS BLOG IS NOT INTENDED TO GIVE MEDICAL ADVICE. PLEASE SEE YOUR DOCTOR IF YOU ARE CONCERNED ABOUT DEMENTIA.

Saturday, 25 May 2013

Let's talk about dementia - Silence

Welcome to the seventh of my seven ‘mini’ blogs for UK Dementia Awareness Week 2013. They are all themed around talking about dementia, exploring different aspects of conversation from the point of view of people who are living with dementia, carers and families.

Day 7 - Take your chance to talk

I love talking about dementia, talking with people who have dementia or who care for someone with dementia – there is so much richness in each person’s experience that if you could bottle it, it would be priceless.

We often take the opportunity to talk to each other for granted, until it is replaced with silence.  I miss talking (often total rubbish!) to my dad. Now our ‘conversations’ are more one-way than they ever were – me recounting my news, asking for his guidance, wishing for his presence and always telling him I love him.

The silence we share now is not as beautiful as it was when he was here. When I could still hold his hands, kiss his cheek, and do all the little things that made him feel comfortable and loved. Now I long for the chance to have him in front of me and to be able to talk to his face again.

Never let the chance to talk to someone you love pass you by, even if you find the conversation difficult. They might want to talk about dementia but not know how to begin that discussion. They might have dementia and be feeling lonely and ignored. But whatever is said, be glad you can say it, hear it, and share those moments – they are what makes life, in all its guises, so unique and special.


Until next time...

Beth x






You can follow me on Twitter: @bethyb1886
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Friday, 24 May 2013

Let's talk about dementia - Love

Welcome to the sixth of my seven ‘mini’ blogs for UK Dementia Awareness Week 2013. They are all themed around talking about dementia, exploring different aspects of conversation from the point of view of people who are living with dementia, carers and families.

Day 6 - The power of love

So many aspects of living with dementia are highly individual and personal, but one element, vital to all life, that I believe dementia never touches is the need to love and be loved.

Who doesn’t want to be surrounded by love, and when we are at our lowest it can be like life-support for the soul. To me, love is about what you do more than what you say, but that doesn’t mean you never tell someone you love them. Every time I saw my dad I told him I loved him. Sometimes he didn’t react, other times he said it back, smiled or motioned to give me a kiss. Indeed my last words to him were about how much I loved him.

Whenever I have listened to people in the earlier stages of dementia talk about their life, one universal theme has been how much love they have for those who are supporting and caring for them. Brimming with pride, modesty and huge love themselves, they readily recognise, acknowledge and show huge gratitude to those whose love helps them to get through each day.

When dementia advances, and maybe the words dry up, unspoken love takes their place. A look, a squeeze of the hand or a peck on the cheek that says you mean the world to me, thank you for everything.

Next post on 25 May 2013.
Until then...
Beth x






You can follow me on Twitter: @bethyb1886

Thursday, 23 May 2013

Let's talk about dementia - Humour

Welcome to the fifth of my seven ‘mini’ blogs for UK Dementia Awareness Week 2013. They are all themed around talking about dementia, exploring different aspects of conversation from the point of view of people who are living with dementia, carers and families.

Day 5 - Better to laugh than cry

I have encountered many amazing people with dementia who incorporate humour into living with the disease. That’s not to say that they find the distasteful jokes about dementia funny. They don’t, and those jokes really aren’t funny to anyone who has personal experience of dementia, but humour that lightens the load for the people with the heaviest burdens is a priceless gift.

Dementia’s naughty side can produce words from lips that had never previously uttered such language. Those moments of confusion, misunderstanding or using the ‘wrong’ words can bring smiles and laughter, both for the person with dementia and those who they are interacting with.

Finding humour is an important element in helping someone to live well with dementia, and for the person themselves it is often far better to laugh about something that they are finding challenging rather than getting angry. Making light of difficult situations can remove those feelings of inadequacy or guilt at not being able to do something.

Laughter, as they say, is a great medicine, so take those opportunities to talk, joke, smile and laugh together to find the happiness and wellbeing that most people never associate with dementia.
 

Next post on 24 May 2013.
Until then...

Beth x







 

You can follow me on Twitter: @bethyb1886

Wednesday, 22 May 2013

Let's talk about dementia - Frustrations

Welcome to the fourth of my seven ‘mini’ blogs for UK Dementia Awareness Week 2013. They are all themed around talking about dementia, exploring different aspects of conversation from the point of view of people who are living with dementia, carers and families.

Day 4 - The frustrations of living with dementia

Living with dementia, especially when you have awareness of what is happening to you, is inherently a very frustrating experience.

You want to get on and do things, say things, go to places and meet people. Yet your brain can’t keep up, bits of the jigsaw of daily living are missing, and you feel limited by being unable to remember the how, what or why of things you previously accomplished without hesitation.

It's a heavy burden, but it would be a lot easier to bear if it didn’t come with the most irritating aspect of living with dementia: dealing with people who just don’t understand. The shop assistant or fellow customer who is impatient for you to remember your pin number, or not hesitate trying to find your change. The passer by who won't stop to help you find your way, or the person on the phone from the utility company who is demanding information that you cannot recall.

Talking to a person who has dementia should be about dialogue on their terms, not on yours. It should never be about adding to their frustrations; it should be a conversation that brings calm reassurance, comfort and sees them as a person, not a disease.

Next post on 23 May 2013.
Until then...


Beth x







You can follow me on Twitter: @bethyb1886
   

Tuesday, 21 May 2013

Let's talk about dementia - Surprises

Welcome to the third of my seven ‘mini’ blogs for UK Dementia Awareness Week 2013. They are all themed around talking about dementia, exploring different aspects of conversation from the point of view of people who are living with dementia, carers and families.

Day 3 - Prepare to be surprised

Ask most people what they think living with dementia would be like, and they assume it’s a life of inability and dependence. Those of us who know otherwise just want to scream, “People with dementia can still do things!”

More importantly, people with dementia still WANT to do things. Stepping in and doing everything for them, without stopping to consider, asking or trying to see what they can do themselves removes their independence, and is actually likely to make their deterioration with dementia more rapid.

An example of this is my dad in the later stages of his dementia. To a casual observer he was incapable of doing anything. Most days he needed to be helped to eat, but some days he could, when encouraged and not rushed, pick up the spoon and feed himself. You might think, what’s the point? Just do it for him. But by doing it himself he proved that not only did he have the ability and dexterity, but most importantly of all, he had the desire to fuel his body to keep going.

So next time you are with someone who has dementia, give them the opportunity to surprise you. Allow them to experience achievement, and when you talk to them, let them know the joy of being praised.

Next post on 22 May 2013.
Until then...


Beth x





You can follow me on Twitter: @bethyb1886
 
 
 

Monday, 20 May 2013

Let's talk about dementia - Questions and answers

Welcome to the second of my seven ‘mini’ blogs for UK Dementia Awareness Week 2013. They are all themed around talking about dementia, exploring different aspects of conversation from the point of view of people who are living with dementia, carers and families.

Day 2 - Asking questions, finding answers

Developing dementia often brings many questions. What is dementia? Why me? What does the future hold? How will I/we cope? HELP!!!

Asking questions is natural. Finding the answers is often much harder. Sometimes there isn’t an answer. Sometimes you have to accept that you will never really understand something, which is one of the hardest aspects of living with dementia. Some of the finest advice I was given, and have passed on many times, is to ‘live in the moment’ with dementia – whether you are the person who has developed it or those closest to them.

19 years with my dad’s dementia didn’t answer all of my questions. I found that the questions that represented my deepest raw anger and grief didn’t have a definitive answer, and still don’t. But I was lucky - for all the questions I could articulate, and issues I could explore with family and friends, think of all the questions that my dad must have had that in the end he couldn’t find the words for.

Talking about dementia means letting rip with our questions as often as we need to and, in the case of someone with dementia, whilst they are able to… and when you think you don’t have the answer, remember, you can always just live in the moment.

Next post on 21 May 2013.
Until then...

Beth x



 



You can follow me on Twitter: @bethyb1886