All posts by @mason4233

Born in 1961, now aged 52, diagnosed with vascular dementia, Alzheimer's and empysemia . Married with 5 children aged 28 - 16 and 2 grandchildren. Trying to make people aware of this terrible disease and give some insight for the diagnosed and their carers !

“Making Memories” by Chris Roberts

Dementia Carer Voices

A very warm welcome back to the wonderful Chris Roberts, who has written some fantastic blogs for us before which you can read here. In this post, he tells us about his travels to Australia to attend the Alzheimer’s Disease International Conference, sharing his insights and the memories made in the process.

This week marks Dementia Awareness Week in England and Wales. You can find out more about this awareness week and what you can do to get involved on the Alzheimer’s Society website here.

Thanks again to Chris, we’re so pleased to be able to share an update on the wonderful work he’s doing, raising awareness all year round.

One important thing about having dementia is making memories !

Which we definitely did in May of this year, we travelled half way across the world to visit Australia and the Alzheimer’s Disease International Conference, 2015 in Perth with my wife…

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Dementia friendly Communities

EVERYONE HAS HEARD THE WORD DEMENTIA, BUT THE TROUBLE IS, NOT MANY UNDERSTAND IT ! …….”INCLUDING ME AND MY FAMILY BEFORE I WAS DIAGNOSED,
BUT, WITH UNDERSTANDING, FEAR CAN BE REDUCED,
ITS THE UNKNOWN ONE FEARS THE MOST !

THAT’S WHY A DEMENTIA FRIENDLY COMMUNITY SHOULD BE BASED FIRSTLY, ON EDUCATION,
EDUCATION WHICH SHOULD START IN SCHOOLS SO NO MORE
MIS-UNDERSTANDING AND STIGMA ABOUT THE ILLNESS WOULD THEN EXIST, CHILDREN ARE OUR FUTURE AND AN IMPORTANT ASSET, THEY SHOULDN’T BE LEFT OUT OF A DEMENTIA FRIENDLY COMMUNITY.

THEN START TO EDUCATE THE SHOPS AND BUSINESSES, THE BANKS AND POST OFFICES, NOT JUST THE OWNERS BUT ALL THE STAFF,
THEN THE PUBLIC TRANSPORT STAFF, TRAINS, TAXIES AND BUSES !

IT IS EASIER TO START WITH THE SMALLER, INDEPENDENT BUSINESSES, THEN THE LARGER ONES, THE CORPORATE MULTI-NATIONALS WILL FOLOW TOO.

MOST PEOPLE WITH DEMENTIA LOSE THE CONFIDENCE TO LEAVE THEIR HOMES ONCE DIAGNOSED……….I KNOW I DID !

THEN GO INTO THE CARE HOMES, THE NURSING HOMES, SURGERIES AND HOSPITALS, EDUCATE ALL !

THEN THE PUBLIC……… BECAUSE WITH EDUCATION COMES UNDERSTANDING,
WITH UNDERSTANDING COMES SUPPORT AND CARING
KNOWLEDGE IS A POWERFUL TOOL !!

THEN THE RESCUE SERVICES, THE POLICE, AND COUNCILS,
WORKING EVER UPWARDS AND OUTWARDS.

THEN COMES CHANGES TO THE ENVIRONMENT,
WORKING WITH THE ARCHITECTS, ESTATE MANAGERS AND THE BUILDERS.
LOOKING AT THINGS LIKE SIGNAGE, LIGHTING AND LIVING ACCESSORIES,
ALSO THINGS LIKE MARKING STEPS, ESCALATORS AND PAVEMENT EDGES ETC,

ALL THE THINGS THAT CAN SUPPORT SOMEONE AND GIVE THEM CONFIDENCE WITHOUT TAKING THEIR DIGNITY AWAY

A BIG THING NEEDED IS INCLUSION, PLEASE ASK US WHAT WE NEED, WHAT WE WANT, IT SHOULD BE NOTHING ABOUT US WITHOUT US !
WE ARE, AFTER ALL, THE EXPERTS IN LIVING WITH DEMENTIA, WE ARE THE EXPERTS BY EXPERIENCE,
US, AND OUR CARERS, AND FAMILY MEMBERS.

YOU HAVE A WEALTH OF INFORMATION BETWEEN US !

PLEASE DONT FORGET THAT DEMENTIA IS A DISABILITY,
A DISABILITY YOU CANT ALWAYS SEE, THERE ISNT A LABEL

SO IF YOU GET IT RIGHT FOR THE PERSON WITH DEMENTIA THEN YOU GET IT RIGHT FOR EVERYONE !
ITS ABOUT PUTTING COMMUNITY SPIRIT BACK, SOMETHING THAT CAN BE SADLY LACKING, IN LOTS OF PLACES THESE DAYS.

ALL THESE THINGS ARE WHAT IS NEEDED TO MAKE GOOD PLACE FOR SOMEONE WITH DEMENTIA,

DEMENTIA FRIENDLY COMMUNITIES SHOULD BE ABLE TO SUPPORT EVERYONE AT ALL AGES AND AT ALL STAGES OF THE ILLNESS,
MAINTAINING THEIR CONFIDENCE AND BOOSTING ONE’S ABILITY TO MANAGE THEIR EVERY DAY LIFE

Dementia rights ! 

DEMENTIA RIGHTS

DEMENTIA IS A DISABILITY,
YET OUR NEEDS ARE HARDLY EVER MET IN THE SAME WAY AS OTHER DISABILITIES

HOW ARE OUR RIGHTS BEING MET WHEN WE ARE LITERALLY ALL BUNGED INTO THE SAME POT, THE ILLNESS IS AS INDIVIDUAL AS WE ALL ARE

HOW ARE OUR INDIVIDUAL AND BASIC HUMAN RIGHTS BEING MET HERE

WE ARE USUALLY ‘LET GO ‘ FROM WORK IN THE TIME OF PRE DIAGNOSIS WHILST WE ARE NOT IN A FULL CAPACITY OR IN A PLACE TO MAKE AN INFORMED DECISION, WITH LITTLE OR NO INFORMATION

HOW ARE OUR RIGHTS BEING MET HERE

SO LATER, WHEN MORE INFORMATION DOES COME, WHEN IT DAWNS ON US THAT ITS NOT ‘DEATH ON DIAGNOSIS’ THAT WE COULD HAVE CARRYED ON WORKING,
THAT WE WERE STILL CAPABLE OF SO MUCH MORE THAN WE WERE TOLD
WE CAN’T THEN FIGHT TO GET OUR JOB BACK EVEN IF WE WANTED TO

WHERE WERE OUR RIGHTS THEN

WE ARE PRESCRIBED WITHDRAWAL, VERY EARLY ON, TOLD WE CANT DO ANYTHING ANYMORE, TO GET OUR AFFAIRS IN ORDER.
HOW IS THIS GUARANTEEING OUR RIGHT OR RIGHTS TO PARTICIPATE AND CONTRIBUTE TO SOCIETY

HOW ARE OUR RIGHTS BEING MET HERE

SERVICES ARE VERY SKETCHY, A POSTCODE LOTTERY OF SORTS, USUALLY INAPPROPRIATE, AND MOSTLY PROVIDED BY STAFF THAT HAVE LITTLE OR NO KNOWLEDGE OF THE ILLNESS
HOW ARE OUR RIGHTS BEING LOOKED AFTER THEN, COMPARED WITH OTHER DISABILITIES

WE MUST ALSO NOT FORGET ABOUT THE RIGHTS OF PWD IN RESPECT OF THEIR CULTURE, THEIR BELIEFS AND THEIR RELIGION

ARE OUR RIGHTS BEING MET HERE

WE HAVE HEARD ABOUT THE WORLD COUNCIL FOR DEMENTIA, ANOTHER COLLECTION OF PEOPLE DOING THINGS ON OUR BEHALF, AMAZING, GREAT, WHERE IS OUR INCLUSION, WHERE ARE THE FOLK WITH DEMENTIA ON THESE BOARDS, AT THESE CONFERENCES
WHERE ARE OUR RIGHTS THERE

IT SHOULD ALWAYS BE “NOTHING ABOUT US, WITHOUT US”

PEOPLE WITH DEMENTIA SHOULD NEVER LOSE THEIR RIGHTS AT THEIR DIAGNOSIS
BUT ACTUALLY HAVE MORE ‘RIGHTS’ AS IT IS OR AT LEAST SHOULD BE,
A RECOGNISED DISABILITY

BUT IN REALITY MOST OF THESE THINGS ARE NEVER MET
ARE OUR RIGHTS BEING MET AT ALL ??

……………..

“Power is knowledge, knowledge is power!” Viewpoint from Chris Roberts

Dementia Carer Voices

This week we are delighted to be able to share Chris Roberts’ Viewpoint piece. Chris has kindly written for us once before, and we’re so pleased to be able to share an update on the wonderful work he’s doing with Dementia Alliance International. Thank you Chris!

I’m your average 53 year old man who cares about dementia awareness, but it has to be goodChris Roberts quality awareness, it has to be about promoting education about dementia because it is starting to touch us all, everyone is beginning to hear the word ‘dementia’ but not a lot of folk actually understand it and with over 850,000 people living with this illness in the UK we all need to know at least a little about it.

Power is knowledge, knowledge is power !

Firstly you can’t catch dementia, it’s a syndrome, a set of symptoms peculiar to any brain disease or injury, the…

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