Who knows better what they need to live with a disease, a condition, a problem, a challenge, a difference than those who live with it?
Nobody, that’s who.
The World Dementia Council (WDC) is an international charity. It consists of 24 senior experts and leaders drawn from research, academia, industry and NGOs in high-, low-, and middle-income countries, and most important, it includes two leaders with a personal dementia diagnosis.
In May 2017, the WDC published a Global Care Statement Calling For More Care and Support For People Living With Dementia. This is what it said in part:
“All persons affected by dementia – those living with the diseases that cause it, their care partners, and their family and friends – have a right to receive the highest quality care and support possible to meet their needs. They have the human right to be treated with dignity and respect. And they are entitled to full and effective participation and inclusion in society. These rights transcend national boundaries and cultures.”
The statement included eight principles of high-quality care and support, the short forms of which are listed below, and which, in my view, apply to everyone, not just people who live with dementia. I’ve put brackets around the bits that could be taken out to make this principles universally applicable:
1) Individuals receive a timely and accurate diagnosis; and are told of that diagnosis
2) People [living with dementia] are entitled to respect and dignity
3) Communities are inclusive of people [living with dementia]
4) Care is person- and relationship-centered
5) The provision of person-centered care is based on continuous assessment and individualized care planning
6) People [living with dementia and their care partners] are involved as active participants in [their own] care planning
7) Medical and care professionals have adequate knowledge [of all aspects of dementia]
8) Care coordination and collaboration occurs between all care providers
Equally important is the WDC statement below that calls for collaboration between all those involved in care whether they be “professionals,” family care partners, or other care providers. I particularly like the fact that monitoring and evaluating care and support is specifically mentioned as I feel this is the only way to stop the neglect and abuse of people who live with dementia in their own homes as well as in long-term care facilities.
The principles also express the need for medical and care professionals to be knowledgeable of all aspects of dementia and to work across disciplines to ensure a holistic approach to disease management; and for care coordination and collaboration to occur between all care providers, including in monitoring and evaluating the care and support provided. Yes. All of that makes sense to me.
Bravo WDC for identifying what people who live with dementia deserve, and what the rest of us who don’t yet live with dementia deserve as well!
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