Rethinking dementia

What you need to know about rementia

Dementia literally means without mind and is derived from the Latin word demens.

Unfortunately, the word dementia or demented has become synonymous with words such as crazy, insane, unhinged, disturbed, mad. This has resulted in people with dementia being labelled and stigmatized.

For decades, dementia was considered a progressive and irreversible disease and a prognosis of misery for the sufferer and family; a living death (Innes, 2002). It was thought to be a disease of old age and once a person was diagnosed, there was nothing that could be done.

Changes in behaviours were considered a normal part of the dementia process and the only way people with dementia could be managed was to medicate them and send them to live in nursing homes until they died.

In the 1980s, social psychologists began to argue for the importance of supporting the carers of people with dementia to enable them to provide care. This was then followed by a call to support the person who had been diagnosed with dementia (Kitwood, 1997).  

Kitwood called for an understanding of dementia that recognised the individuality and uniqueness of each person, regardless of their cognitive ability, and placed communication and social interaction as central components of person centred care.

He called this philosophy of care rementia:

• Treating the person as an individual
• Valuing the person and family
• Taking the perspective of the person when planning and providing care
• Ensuring that a positive social environment exists in which the person can experience relative well being (Brooker, 2007).

Rementia

Kitwood believed that people with dementia could regain some of their lost cognitive and functional abilities through rementia. Rementia places emphasis on enabling people with dementia to communicate, to express their feelings and wishes and to maintain and develop relationships (Allan and Killick, 2008).  

Dr Daniel Nightingale, clinical dementia/rementia specialist, states that in rementia, independence and free will of the person with dementia is honoured.

Rementia enables us to give back the skills and abilities that the person has lost or had taken away due to being labelled as having dementia. In a nutshell, dementia says the person with dementia cannot; rementia says the person with dementia can.

In dementia, we see the person first, a person with a life history, a family, a member of the community, a person with lived experiences, a work history, a childhood.

If we embrace that person and help to reduce the fear and anxiety he/she may feel then we will increase confidence, self esteem, and empower the person to take back control of his/her life. 

Putting rementia into practise

Rementia is achieved by shaping the attitudes and engagement of those supporting people with dementia who live in their own home, in supportive/assisted living environment and in nursing homes.

Nightingale (2017) believes the behavioural and psychological symptoms we often see in people with dementia are not necessarily due to the dementia process, but due to the attitudes and interaction of others e.g. the things we do as a society that restrict and diminish the person with dementia.

When communication/interaction is negative and undermines personhood, it can cause catastrophic damage to the well-being of people with dementia.

Negative interactions include:

• Disempowerment – not allowing person to use his/her abilities, failing to help person complete actions he/she has initiated
• Infantilization – treating person very patronizingly (like a very young child)
• Disparagement – telling person he/she is incompetent, useless
• Mockery – teasing, humiliating, making fun of person
• Intimidation – inducing fear in person through use of threats/physical power
• Banishment – sending person away/excluding from activity

Communication and Interaction

Kitwood and Nightingale believe that when excess disability is removed by changing from a toxic social environment to one that supports abilities remaining in people with dementia and/or finding a way to help the person overcome their disabilities by using their existing strengths and abilities.

Rementia is achieved through a variety of positive interactions:

• Recognition – of the person as a unique individual
• Collaboration – between the person and caregiver over caring tasks
• Validation – acknowledging and responding to the person’s emptions
• Facilitation – enabling the person to act or express
• Relaxation – in he company of others
• Celebration – the sharing of joy
• Play – activities enjoyed for their own sake
• Timalation – gentle interaction involving the senses e.g. aromatherapy, touch
• Negotiation_ allowing choice and control for the person
• Holding – providing a safe psychological space for expressing strong emotions

Therapeutic activities

In the past, the sole purpose of therapeutic activity was to decrease disturbed behaviour, agitation and exit seeking. In rementia, the main purpose of all activities is to support well-being, dignity, and self worth of people with dementia in the face of high levels of cognitive loss.

For example, creative and artistic activities and reminiscence work place emphasis on enabling people with dementia to communicate, to express their feelings and wishes and to maintain and develop relationships (Allan and Killick, 2008).

People with dementia want to feel valued, they want to feel they are part of the community, and a respected member of society.

The good news is that here in the Okanagan, many residential care sites have moved away from traditional dementia activities and routines and now follow care models that embrace the rementia philosophy: personalized engagement based on the person’s abilities and preferences.

This is my final article on Dementia Aware: what you need to know. I hope you have found the information educational, supportive and helpful.

Thank you for your kind words of support and emails, and a big thank you to Ross at Castanet for giving me the opportunity to write a column about dementia.

I wish you all a safe, happy and healthy New Year! 

Tracey

This article is written by or on behalf of an outsourced columnist and does not necessarily reflect the views of Castanet.