D is for Dignity in Dementia Care


Focusing on the person-centered care for a person with dementia (PWD) involves a large amount of personhood and spirituality, an empowerment which can only be achieved through dignity in dementia care. An individual living with dementia must not be seen as a “living death” as Ben Bano, a well respected social worker specialized in dementia and religion in the UK mentioned in a conference given back in 2012. It is a caregiver’s responsibility and part of being kind to others to help promote the personhood on a patient with advancing dementia. As Ben said in his speech, “through the prism of spirituality, even as mental and physical faculties decline, we can enable a person with dementia to ‘live life to the full’ and enjoy times of flourish and thriving.”

Part of being a witness of the blossoming steps, as small as they might be, is promoting that breakthrough by setting the right circumstances. Person-centered care, tears down that old philosophy of “one size fits all” in dementia care, by respecting and enhancing the PWD’s individuality or “personhood”. It involves a great understanding and meeting the “inner” needs of the PWD.

Any human, no matter their condition or disability has rights as a citizen that need to be respected. The “malignant social psychology” and the stigma behind the word “dementia” has stained the correct comprehension of what the disease is and how a PWD must be treated, with dignity and humanity. We can reverse this misinformed social cognition by creating awareness and reinforce the image of the person with dementia as someone who is capable to feel emotions, both positive and negative, and also share these feelings to those willing to be present in what often is a confusing and bewildering situation. This concept is what Tom Kitwood, a dementia researcher (he worked through the Bradford Dementia centre in the 1990’s in changing our perception in the way we see people with dementia), created as the term ¨personhood¨ to fight the stereotypes built by lack of information in society. Ben Bano explains this as “we see the person with dementia as a ‘living person’ rather than a ‘living death’.” he also adds, “a person with dementia is seen not just as an object of care, but as a source of wisdom and experience”.

On the spiritual side, it is important to make a distinction, spirituality is not the same as religion. We don't have to necessarily have a certain religion, but we all are spiritual beings. Any elder person, as they see their life advancing, with or without dementia, needs to find a purpose and sense of meaning to avoid a futile existence in their increasing weaknesses. Viktor Frankl, writer of “Man’s Search for Meaning (1984), wrote, “being human means to be open to the world, a world, that is, which is replete with other beings to encounter and with meaning to fulfill”. To this Ben Bano adds a very eloquent quote from C.G Jung:

“We cannot live in the afternoon of life according to the programme of life’s morning -for what was great in life’s morning - money making, social existence, family and posterity, will be little at evening - whoever carries into the afternoon the law of the morning will pay for it with damage to his soul” (Jung, 1933)

Spirituality becomes an important aspect of personhood because it is the essence that gives any life its “humanness”. It is what provides meaning and purpose to a person’s life and gives the strength to face the fluctuations in their existence. Understanding a person’s spirituality is finding a big part of that person’s personality.

The caregiver is the key or the channel for a PWD to stay connected with the world and their personhood. As Bano points out in his speech “Caregivers must remember, reinforce, and reinscribe the identity of the person with dementia…we must preserve the person’s identity as the person’s own grasp on it weakens…”

Many social studies have shown the importance of maintaining an ethical and upright principle of dignity to empower the person with dementia. Find ways to promote and uphold their value as a human being. Bano talks about “enablement” as another concept to help promote the person’s autonomy rather than dependence.

Having learned the PWD’s spiritual story, the caregiver needs to find a way into adding this into the everyday experience of the PWD. A big part of achieving this is communication. While it can be a little slower to get a message through to someone with dementia, it should never be condescending or conducted in what might be looking down on the person.

It is on all of us as a society to be involved in the care and support of people with dementia, to promote and empower their individuality through personhood and spirituality with a great amount of dignity.

Related Read:

The DMS Podcast: Patient-centered Care with Romina Oliverio