After last weeks comments on my challenges with Dementia, this week has been a challenging one mainly for my COPD rather than my Dementia.

With temperatures swinging from 26C one day to 16C the next, then back to 26C it was inevitable that I would get a chest infection with the usual week of emergency Doxycyline.

For the most part Dementia remained on Pluto after last weekends attempts to keep me there, I cut back on my Dementia related activities for the week and focused on Family and me time.

Monday continued the journey back from the weekends visit to Pluto and the signs of a chest infection began.

Tuesday, dosed up on antibiotics and paracetamol, Sheila and I took our Grandson Lucas to Scarborough for the day which was not without it’s challenges.

Wednesday and Thursday were me time, plus catching up on emails and other peoples blogs.

Friday and Saturday saw my articles on Banning the Behavioural and Psychological Symptoms of Dementia (BPSD).

The campaign to ban BPSD is fundamental to changing Dementia care incorporating a rights based approach under the UN CRPD.

Currently, healthcare systems follow the medical model of BPSD which leads to the pathway of Chemical Restraint, Deprivation of Liberty and Involuntary Care.

The medical model treats the symptoms of BPSD usually by Chemical Restraint which leads to increase clusters of behaviours associated Dementia.

The social model  is concerned with treating the causes of behaviours, reducing the need for Chemical Restraint, Deprivation of Liberty and Involuntary Care. It enables  people to continue to live with their Dementia’s for longer, reducing the need for safeguarding, involuntary care, being moved to a Care Home and respects the persons rights to live their life without restraint.

The United Nations Convention on the Rights of Persons with Disabilities (CRPD) is a set of universal rights which many countries have ratified but still do not enforce through legislation and putting into practice.

Dementia is now described in UN documents as a cognitive disability. It is not a mental health disorder, yes we may need the intervention of a mental health professional at the end stage of our Dementia as with other chronic terminal diseases. Imagine someone with cancer being chemically restrained because of behaviours caused by pain, imagine the outcry yet people with Dementia can be chemically restrained for something as simple as pain.

Sadly, Dementia is still seen as a silent disease and we are perceived generally as being hunched over, drooling, with wrinkly hands, yes we do suffer at times as if we had another chronic terminal disease but we would be perceived as fighters not sufferers.

We have the right to chose where we live, to family life, to make mistakes even if they have negative consequences, the right to express ourselves, to receive support and benefits.

We also have the right not to be abused verbally “you don’t look like you have Dementia” etc, not to be restrained verbally, physically, chemically or legally for the benefit of others except in extreme circumstances as with any other chronic terminal disease.

The Government, the media and consequently society blame people with Dementia and other disabilities for the ills of society, saying the young shouldn’t pay for the old, we are a drain on resources, that we should be stripped of our money and property to pay for our care.

Were these things said about AIDS/HIV in the 80’s, no, the world reacted positively, yet Dementia is talked about as the greatest healthcare challenge since then and yet it seems to be that where disabilities are concerned, we are returning to the 1930’s.

There is a lot of talk about change and many initiatives, basically a smokescreen for inaction, they do nothing to bring about a rights based system of care.

The Government can spend £100bn on a new version of Trident even tough the UK is signed up to nuclear reduction treaties but it cannot fund appropriate care for its citizens, including

In closing reader, the campaign to ban BPSD is the foundation to a move to inclusive, state funded, rights based, post-diagnosis support, services and rehabilitation for Dementia care, which reader, will be the subject of an article next week.

Additional Sunday Reading relating to the Ban BPSD Campaign

The United Nations Convention on the Rights of Persons with Disabilities (CRPD)

Behavioural and Psychological Symptoms of Dementia (BPSD) – What Is It

Behavioural and Psychological Symptoms of Dementia (BPSD) – Why Ban It