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...

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