Kate Swaffer (2014) has written about her perception of the receipt of a diagnosis of dementia. The account given by Swaffer is widely held, it turns out.
“The cost of this Prescribed Disengagement™ sets up people with dementia to become victims or sufferers, their partners to eventually start behaving like martyrs and to take over for the person diagnosed. It sets up people with dementia to believe there is no hope, there are no strategies to manage the symptoms of dementia, and more importantly, that it’s not worthwhile trying to find any. It negatively impacts self-esteem, a person’s finances, relationships and the ability to see any sort of positive future. Having dementia does not mean you have to give up living a pre-diagnosis life, nor living beyond your diagnosis. For some, following a diagnosis of dementia, their whole life becomes about dementia and many seem to forget to keep living the other parts of their lives. This is the negative effect of the Prescribed Disengagement™.
Prescribed Disengagement™ also takes away any power or control of the person diagnosed, giving it all to the family carers and service providers. It is unhealthy and wrong. Dementia is the only terminal illness I know of where people are told to go home and give up, rather than to fight for their lives. Prescribing disengagement also lowers a person’s own expectations about how they can live, and it lowers others’ expectation about how we can function and live, including employers, health care professionals and service providers.”
(Swaffer, 2014)
Under international law, the Convention on the Rights of Persons with Disabilities exists to protect citizens with disability.
a) of the Preamble states:
“The States Parties to the present Convention,
- Recalling the principles proclaimed in the Charter of the United Nations which recognize the inherent dignity and worth and the equal and inalienable rights of all members of the human family as the foundation of freedom, justice and peace in the world,”
The Equality Act (2010) in England and Wales makes discrimination against persons living with disabilities unlawful. Dementia is a disability.
On 6 December 2014, the BBC news website ran article with the title “Disabled people’s access to High Street ‘shocking’, audit finds”.
According to the report, accessibility experts DisabledGo visited all of the 30,000 venues in person to assess them, in the largest ever audit of its kind in the UK. They found a fifth of shops had no wheelchair access, only 15% of restaurants and shops had hearing loops and three quarters of restaurants did not cater for those with visual impairments.
If we are shocked about this lack of access for people who are physically disabled, we should be equally shocked for lack of accessibility for people with cognitive or behavioural problems from living with dementia.
Swaffer in her analysis goes onto compare the medical and the social responses to the event that is the disclosure of the dementia diagnosis.
“Misguided and preconceived misconceptions about the symptoms of dementia are used to support telling us to give up living our pre-diagnosis lives. Instead, the recognition of the symptoms as disabilities would assist with a more equitable and dementia-friendly experience for the person with dementia after diagnosis. In contrast to the medical model, the disAbility model of care is positive and supports continued engagement with our prediagnosis lives. “
This picture is from: here.
For the sake of parity of esteem, in other words not treating mental health as inferior to physical health, we need to apply the same rigour for ‘reasonable adjustments’ for cognitive or behavioural interventions as for physical ones.
Equality law recognises that bringing about equality for disabled people may mean changing the way in which employment is structured, the removal of physical barriers and/or providing extra support for a disabled worker (see, for example, the Equality and Human Rights Commission website, 2014).
Coincidentally, yesterday, the British Psychological Society (2014) launched its new publication on care pathways for early stage dementia and psychological interventions in early dementia.
Here’s Agnes by their stall in Glasgow (Scotland).
In other words, buildings should have adequate signage for people living with dementia of the Alzheimer Type. It is beyond reasonable doubt that early dementia of the Alzheimer type is characterised by problems in learning and memory, including in spatial navigation (Serino and Riva, 2013).
It is also beyond reasonable doubt that people with such cognitive disabilities will benefit from specialist design as a reasonable adjustment (Habell, 2013).
The recognition process for dementia friendly communities is currently being developed by the Alzheimer’s Society (2013). I feel itwill be a valuable opportunity for people to demonstrate that they are not only obeying the letter of the law, but they are also entering into the spirit of it.
References
Alzheimer’s Society (2014) Recognition process for dementia friendly communities. http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=2136
BBC News website (6 December 2014). “Disabled people’s access to High Street ‘shocking’, audit finds” http://www.bbc.co.uk/news/uk-politics-30342957
British Psychological Society. 3 Days To Go to Launch of ‘Clinical Psychology in Early Stage Dementia Care Pathway’ and ‘A Guide to Psychosocial Interventions in Dementia’ (1 December 2014) http://www.psige.org/news/33/3+Days+To+Go+to+Launch+of+%27Clinical+Psychology+in+Early+Stage+Dementia+Care+Pathway%27+and+%27A+Guide+to+Psychosocial+Interventions+in+Dementia%27
Equality and human rights commission. (2014) Workplace adjustments. http://www.equalityhumanrights.com/private-and-public-sector-guidance/employing-people/work-place-adjustments
Habell M. Specialised design for dementia. Perspect Public Health. 2013 May;133(3):151-7. doi: 10.1177/1757913912444803. Epub 2012 Jun 22.
Serino S, Riva G. Getting lost in Alzheimer’s disease: a break in the mental frame syncing. Med Hypotheses. 2013 Apr;80(4):416-21. doi: 10.1016/j.mehy.2012.12.031. Epub 2013 Jan 29.
Swaffer, K. (2014) Reinvesting in life is the best prescription (1 December 2014) Australian Journal of Dementia Care, http://journalofdementiacare.com/reinvesting-in-life-is-the-best-prescription/
UN Convention on the Rights of Persons with Disabilities, http://www.un.org/disabilities/convention/conventionfull.shtml
