After the first 4 years of my journey with Dementia, 2018 marked the beginning of change in my journey with Dementia.

As new year dawned, I was still in that dark place following my diagnosis of Alzheimer’s and Frontotemporal Dementia in March 2017, without the support of the NHS or local Authorities

By the end of March 2018, with the help of the A Good Life with Dementia course ,I had begun to re-engage with life and had begun to reinvent myself and climb out of the metaphorical Dark Hole .

This article will be gradually updated.

Today’s re-blogs as part of World Alzheimer’s Month focuses on two short articles by Kate Swaffer, relating to 20 things not to say or do to a person with Dementia.

“there was some angst from a couple of people about some of my points, but overall, mostly consensus, especially by people living with dementia. If it is possible to positively impact the life of even one more person living with dementia, then it would not matter how many people without dementia had disagreed with me.”

20 things not to say or do to a person with Dementia

Today’s re-blog as part of World Alzheimer’s Day focuses on Susan Macaulay’s article about 4-minute survey results that debunk decades-long notion that BPSDs are symptoms of Dementia.

“The roots of this erroneous belief lie in the work of researcher Dr. Jiska Cohen-Mansfield, who, in the mid-1980s developed a 29-item scale to measure agitation in nursing home residents. The Cohen-Mansfield Agitation Inventory (CMAI) spawned others such as the Nursing Home Behaviour Problem Scale (NHBPS), which also comprises 29 items. In the late 1990s, through no fault of Dr. Cohen-Mansfield’s, the types of behaviour tracked by research tools such as the CMAI and other similar scales came to be known as the “Behavioural and Psychological Systems of Dementia (BPSDs)..”

4-minute survey results debunk decades-long notion that BPSDs are symptoms of Dementia

Today’s re-blog as part of World Alzheimer’s Day focuses on the campaign to ban the Behavioural and Psychological Symptoms of Dementia (BPSD).

“The campaign to Ban BPSD in no way advocates the complete removal of antipsychotics.

As with any other chronic terminal disease they do have a place but the campaign wants to see healthcare systems move from the medical model which on further reading you will see that it abuses the person with Dementia and ignores their human rights, to the social model that treats the causes.

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

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

Today’s re-post as part of World Alzheimer’s Day focuses on Dr Al Power’s article titled “Medicalization of Feelings: BPSD or BPSOD?”

“Here is the premise: people living with various forms of dementia often exhibit certain signs of emotional upset, which may include anger, sadness, fear, frustration, or anxiety. These are now referred to with the BPSD label, and even classified and categorized, with prescribed approaches to various categories.”

Bullied and banned: Rachel’s story

Today’s re-blog as part of World Alzheimer’s Day is about the campaign to ban BPSD, the Behavioural and Psychological Symptoms of Dementia.

“The Campaign to ban the medical model of BPSD, the Behavioural and Psychological Symptoms of Dementia, raises awareness of the need to move from the medical model of Dementia care to the social model, moving from treating the symptoms to treating the cause.

It looks for new and innovative approaches to Dementia and aged care philosophies and practices.”

The Campaign to Ban BPSD

Today’s re-blog as part of World Alzheimer’s Day is about:

“articles that form the first 4 years of my own personal story from around January 2014 when I first started to notice changes in my cognitive abilities, through my diagnosis to the end of 2017:

As you will have read, they were challenging times, not helped by a system severely lacking in funding, support, rehabilitation, services and a lack of will to uphold our rights.”

The Journey Begins…