Review 1 "The Dementia Diaries" [ Update No 2 04/11/13]

Four youngsters. Brie, Fred, Sarah and Sam wrote the 28 entries in The Dementia Diaries. With nearly 100 pages this booklet deserves to be a best seller. Yes a best seller! When the second volume arrives in the world's  bookshops the words "International Best Seller" will not be a cliche. It is now available on Amazon.

From the first page I had smiles, laughs out loud, tears in my eyes and numerous moments of reflection! The book is described as a "novel of cartoons". Written and illustrated by Matthew Synman (and, I suppose, the now famous four), we have been given a gem.

The four grandchildren tell us, in their own words, of life with a grandpa or grandma who begin to have memory problems, minor crises, bouts of wandering, and who are eventually assessed and diagnosed as four of those living with "demensias" (which became "dementia" in a later diary entry - after some googling).

The book vividly describes in various ways, but without jargon, the clinical symptoms of dementias in the words of  grandchildren of about 9 to 14 years.  In addition we are given by each diary author some insights (with illustrations and comments) into life as young persons.

All adults have been through childhood - those who can remember will smile (or cry) at some of the comments of family life in a home community. That aside may not seem pertinent, but it should not diminish the important messages for adult readers about the implicit (mis)behaviour towards those who come to live with dementia by friends. At thde same time their are heartwrming stories of help in naturally dementia friendly communities.

Finally, the natural acceptance of their grandparents life with dementia, although expressed at times with a sense of loss and sorrow, is an example to all.

The book ends with a useful 'directory' about dementias and sources of information about them and the support services available, particularly in Kent but also nationally.

[Please note that if you want to read The Dementia Diaries it is available in all Kent CC's public libraries and has been distributed to Kent County County's schools. Otherwise, it is available from KCC SILK office for £5.99 including packaging and postage. It is likely that special arrangements will be made for bulk purchases. Also see Post 15.]

Publisher:     SILK Publishing, Social Innovation Lab Kent, Kent County Council, 3rd Floor, Invicta House, County Hall, Maidstone, Kent ME14 1XQ.
ISBN:  978-0-9576600-0-7  

9 Preventing or Mitigating a Propensity to Wander with Assistive Technology [Update 2 - 25.13.13]

In the book The Dementia Diaries (TDD) one grandchild recounts how grandpa took to wandering very frequently about his home community. In earlier times he had become a local celebrity such that when he did wander many residents would tell his family of his whereabouts - the community was dementia friendly.

'Wandering' is a term used to describe a memory concern where a person, perhaps with a memory problem or in early onset dementia, cannot remember how to get home or to their destination, is lost, and may appear confused.

A seemingly a-technological, anti-wandering device is a simple mock-up "bus stop". The idea is that when a person with dementia mentions wanting to collect the grandchildren or to go shopping etc, they may start to go, ie wander. A "honeypot" for many, if not most seniors in life is the bus as a means of transport. We all wait for buses. If a care home garden has a bus stop two possible functions arise: 

1. the place becomes a meeting place
2. the bus stop is then honeypot for social interaction
3. it is a place where a wanderer may be found.

This post attempts to flag up findings in the literature on the need to give  attention to more technological ways of preventing or mitigation a propensity a person with dementia may have to wander.  Not all living with dementia will wander and if a person does, it may be a passing phase. Nevertheless it may become a concern for all including carers and families.

The practical steps and assistive technology at home or in a care setting  that might be taken are numerous, and some are not without opposing views. They include:

1. A life record and a recent head and shoulders photograph (taken within the last six months
2. a card giving personal details - name, address etc - and contact details of the person's carer or family member 
3.  'assistive' care technology involving which surveys movement within the home or care setting, eg care home
4. exit doors and gates with devices clocks, lights or other means of informing the wanderer or warning alarms to warn a carer or nurse
5. Signage which shows the individual, for example, that the route being taken leads to a particular location, eg the garden
6. A GPS device carried by the person with dementia which shows where he or she is if wandering.  

For Swanley and the county, the charity, Kent Search and Rescue (KSAR) (coordinating with Kent Fire and Rescue Service and the Kent Police) will conduct a search for a missing person. KSAR recommends the writing the life history or record to include:

• places which the wanderer particularly likes or dislikes
• a colour photograph taken on the days on which the clocks are changed [For the benefit of readers who are overseas - our clocks are changed by one hour twice a year  for daylighting purposes.]
• Any other information which may assist in any search.  

A note of the clothing a person is wearing or may be thought to be wearing might also be useful to the searchers.

Other assistive technology allows a carer to have a record of or to monitor the movement of a resident within their home, or when they leave it. However, devices at the exit doorway may be in place to set off an alarm in the supervisor's office or to gently warn the wanderer of the time of day by say, "It is night time." or by showing an illuminated clock. Another device might be a mat with an embedded warning signal. [It is of course important not to distress the person.]

The Sussex Police have a scheme based on a GPS device for persons living with dementia. It shows where the wearer is located. More detail of the adoption of the device is given by copying/pasting the link:

 http://www.theguardian.com/commentisfree/2013/may/01/dementia-police-tracking-device

Finally, in South Korea Dr Young Mi Lim is conducting research into links between wandering and wayfinding by those with dementia.