Living well with dementia

‘One night we laughed until it hurt’

‘…She couldn’t follow the plot of a film or plan ahead, but all the things that are beautiful in the world, the tastes, sights, sounds, smells, the pleasure of gentle touch, the love of and for life are all things she can experience and we shared.  One night we laughed until it hurt…’    Dementia Challenger’s blog

Pansy Green lives in Los Angeles.  She is 73 and was diagnosed with dementia three years ago.  She reads, does crosswords, babysits her grandkids and walks.  This year she and husband Winston are going to Russia on holiday.

A lot of us have a stereotypical view of dementia but as this short film shows many people with dementia are active in increasing our knowledge of the condition

 As the above examples show, you can live well with dementia.  It affects everyone differently and at different rates.  You have 86 billion brain cells and, even when dementia is well advanced you still have more than 50 billion of them left.  While we, of course, don’t underestimate the problems dementia can cause, we think its equally important not to overestimate them.

Take joy from what still can be done and don’t dwell on what is no longer possible

 10 steps to living well with dementia

 1.         Talk about the future

Everyone should consider making a will and Lasting Powers of Attorney – ideally years before either may be necessary.  It is  easier to talk about your own mortality when you hope it is still a distant prospect.  By having an honest and open conversation about death and dementia with family and friends you will be better equipped to deal with them should they arise .  We all die eventually.

2.         Seek an early diagnosis

Fewer than 50% of people who have dementia have had it diagnosed.  We believe it is helpful to secure an accurate diagnosis as early as possible but this is something you should choose to do because you need to be ready (where cognitive function permits it) to  face the fact that you could have the condition.

It’s also important, however, to avoid misdiagnosis.   Memory loss and other problems are sometimes assumed to be signs of dementia but may be caused by other medical condition.  If you are diagnosed with dementia, at least you will hopefully have time to plan for the future.  You can also explore medical treatment which can potentially slow the condition’s progression.

3.         Remember that dementia affects everyone differently

No two cases are the same.  Everyone’s dementia develops differently.  Don’t stereotype yourself or your friend or family member with the condition.

4.         Stay active

Should you or a friend or family member be diagnosed with dementia it’s important to keep mentally and physically fit and active for as long as possible.  Studies show this can slow the condition’s progress.  If you need encouragement to take more exercise, how about owning a dog?  They will get you out of the house and offer great companionship.  A number of excellent charities can offer advice on a suitable dog.

5.         Talk to family and friends

Don’t keep it  a secret.  One in three of us over 65 will develop it dementia. It is nothing to be ashamed of.  If you can’t face telling everyone at once, select someone you can confide in as a first step.  Be ready to talk to a friend or family member if they have been diagnosed and want to talk about it.

6.         Build a support network

A diagnosis will open the door to local authority support and guidance.  Start to put a support network of friends, family, Social Services or paid help, in place as early as possible.  As the condition develops, the ability of someone with dementia to deal with new faces and arrangements may reduce.

 7.         Fight back

There are things you can do to help you or others cope with the symptoms.  If you forget things, write them down.  If you get lost when you go out, get a sat nav for the car.  if you don’t have a will and Lasting Powers of Attorney, put them in place.  At every stage, the difficulties and worry caused by dementia can be eased by having a better understanding of it and being well prepared.

8.         Acknowledge their reality

Dementia affects people differently and at different times.  Medication can also cause side effects so keep it under review.  If you or a friend or family member has the condition, while memory loss might be an obvious sign, difficulties with some or all of the following may also be experienced:

•   finding the right words to express yourselves
• thinking things through
• getting confused about time and place
• vision problems
• unusual emotional behaviour
• restlessness and disorientation

Problems can be exacerbated if someone with one or  more of the above conditions is in a stressful situation or is feeling unwell.  For example, crowded places, meeting strangers, or coming across something they perceive as a hazard (a shiny floor could be seen as a pool of water for example) can cause heightened anxiety and distress.

If a person with dementia feels they are about to be attacked, it is pointless to deny it because, for them, the threat is very real.  

A more helpful approach can be to steer them away from the ‘threat’, letting them know you are dealing with it.  If you can reassure them that threat has been dealt with, they will see you as someone who is helping them rather than being part of the threat.

It can be difficult to come to terms with the fact that their reality is so different but try not to contradict it because this can cause great distress.  For instance, if a spouse asks for their long dead parent, it will upset them to be told that they are dead. Try instead to deflect the question and get them to talk about something else.

9.         Remember the value of long term memory

As a person loses their short term memory, the importance of their long term memory increases.   Encouraging someone to talk about their past life helps give them a sense of identity, and improves their confidence.  If a person with dementia feels they cannot have a coherent conversation they can become withdrawn and depressed.  Creating picture and memory books can be a good way of enhancing this.

10.       Don’t forget the power of a smile and a hug

The amygdala is the part of our brain which controls our emotions and it is the last part to be affected by dementia. A person may not know who has given them a smile and a hug but they will remember the warmth of it.

Even during the later stages of the disease, a person with dementia can still enjoy the moment.

They still have their sense of smell, touch, taste, hearing and sight.  A walk in the park, an ice cream, a day at the beach all can still be a source of joy.