Alzheimers Canterbury

Keeping your independence with dementia

There are a number of simple things you can do that will help you as your memory becomes less reliable. Starting to use memory prompting strategies early on gets you into a pattern of behaviour that can maximise your independence as well as your confidence.

Keeping to a routine aids memory in dementia: Having a routine is one of the best memory prompts. Patterns of behaviour become an aid to memory and help a person with dementia feel secure and less anxious too.

Diary and notebook keeping for dementia: Keep a diary or notepad. Use a daily diary to write down the everyday tasks, household duties and activities that you have arranged or want to do. You can also use them for thoughts and ideas. Carers can write in activities or 'must do's' too if you want as well.

Notice Boards memory and dementia: Pin reminders, a time-tables, ideas, etc on them and it is a good alternative or backup system to a diary. Noticeboards are great visual reminders. Helpers or caregivers can also put reminders of activities or what day it is.

Preparing for Christmas

Christmas is a time when families gather together, a time of celebration. It can also be a time when traditional roles and responsibilities can be difficult to maintain, which can be stressful. Here are some ideas which may help you to make Christmas a more enjoyable time.

Prior to Christmas: Making a Christmas cake and other treats for Christmas Day. If your baking skills are affected, now could be a great time to pass on those secret family recipes to other family members. Involve children and grandchildren and ensure that the family tradition is passed on not just for the wonderful flavours, but for the memories they bring!

Purchasing and wrapping presents. Crowded shops and lots of noise can be stressful. If your role has been to purchase family presents think of less stressful ways to achieve this. Consider mail order options to purchase gifts. If you do like to shop in person, take someone with you to share the load – and carry the presents. Shop when it’s quieter and try not to leave your purchases till too close to the big day!

Decorating the Christmas tree. If your mobility and balance have been affected the role of decorating the tree may be challenging. Make it a fun activity to share. Have a “tree decorating party” and involve other family members. A great time to reminisce especially if there are treasured baubles which have been in the family for many years.

Stigma! What can we do about it?©

Stigma! A poll last year surveying over 4000 United Kingdom (UK) adults, conducted by Alzheimers Society UK, found that half of those adults think that dementia is ‘a condition plagued by stigma' (Alzheimers Society UK Press Release published 7 October 2008).

Terry Pratchett, a well known UK author diagnosed with dementia, stated in the same Press Release that ‘it's a strange life when you "come out" - people get embarrassed, lower their voices and get lost for words'. He adds ‘what is needed is will and determination. The first step is to talk openly about dementia because it's a fact, well enshrined in folklore, that if we are to kill the demon that first we have to say its name'.

There is plenty of anecdotal evidence in New Zealand to suggest the situation is similar here. All too often people with a diagnosis of dementia experience stigma; for example from ‘the friends' who stay away and from others who talk about a person with dementia in front of them as if they were not present. Many, if not all, readers will be aware too that such stigma can at times be extended to those close to a person with dementia.

STRANGE NEW WORLD: PART 1

When Persons with Dementia Must Visit the Hospital

By Thomas Orton

Reprinted with permission from the Winter 2007 DIMENSIONS newsletter produced by the University of Washington Alzheimer’s Disease Research Center (www.uwadrc.org).

For a person with dementia, going into the hospital can be like a trip to the moon. For most older adults, a hospital stay – for tests or for surgery – is at some point inevitable. But for the dementia sufferer, time in the hospital temporarily but traumatically cuts off the familiar sources of support – friends, family, church, community. This article, and a follow-up in the next issue of Dimensions, will explore possible avenues for easing some of the pressure and strain on the person with dementia and everyone involved in his or her hospital care.

If the person you care for is frail or has multiple medical conditions, there is an even greater risk of an unexpected trip to the emergency room. It’s a good idea to be prepared. Pack an overnight bag ahead of time with all the necessities. On a sheet of paper in large bold print, type out all personal information, such as address, contact phone numbers and e-mail addresses, date of birth, social security number, insurance information, and religious preferences. Include a list of known illnesses or conditions, diet restrictions, food and drug allergies, medications, and normal blood pressure. Also place a copy of the individual’s living will or health care advance directives in this bag. Be sure to update all of this material each time there is a change in contact information, medications or medical status.

People react to this question in different ways, and often very strongly. Some, no doubt thinking of a particular person and how difficult or harmful it would be to break the news of a diagnosis of dementia, firmly say “No”. Others, possibly including people who have no direct personal experience with having to break such news, firmly say “yes”.

There is a delicate balance between helping someone to maintain hope, trying to maintain the relationship we have with someone and telling the truth. I tend to think that telling the truth is very important and that there are ways of telling the truth that minimise the chance of causing harm. To put it another way, it is important to try to achieve a balance between all three of these factors rather than stubbornly clinging to only one. Let’s consider these the three main issues in turn.

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