Alzheimer's blog

Cultural shift under way in addressing Alzheimer's

By Angela Lunde October 2, 2012

With the Alzheimer's epidemic on our doorstep, the fight is on. Over the past couple of months, many of you have written to express that while prevention and cure is a noble and necessary fight, it isn't the only fight. I wholeheartedly agree — our biggest fight may be about something else.

The fight I'm speaking of is about a making a dramatic shift in how persons with dementia are viewed, cared for and integrated into our communities.

It's a shift from perceiving people living with dementia in a "disability" way with a degenerative disease without a cure, to seeing a person living with dementia as a whole person.

Persons living with dementia (Catherine and Carole, for example, who've written in previous postings) have demonstrated that having dementia is about the continuation of living life to the fullest, of maintaining a sense of meaning and purpose, and of fulfilling needs that are at the core of who they (and all of us) are.

Persons living with dementia teach that we're all mortal, and that living life is about experiences and relationships — that never changes.

Yet, many see a person with Alzheimer's or a related dementia as someone "less than" and as someone who can longer contribute. Current approaches to care often exclude persons living with dementia from decision-making.

Persons with dementia are viewed as incapable of communicating their experiences, and thus unable to make meaningful contributions to their own lives and the lives of others.

A symptom of dementia is a change in verbal communication skills, and society often marginalizes those who can't communicate or who communicate inappropriately.

Behavioral disturbances from a person living with dementia cause them to be labeled as "bad", "challenging" or "diseased" instead of just being frustrated at being unable to communicate effectively.

As an example, it's not uncommon for a person living with advanced Alzheimer's to repeatedly cry out, "Help me, help me." A nurse or staff person may respond to this by assessing whether the person is hungry, wet, in pain or any number of physical conditions. If all of these conditions fail to determine a possible cause, the person may be labeled as difficult or attention seeking. As a result, staff may ignore the behavior (hence the person), and consequently the cries may get louder.

For the person with dementia, the cries may be the only way they have of reaching out. Reaching out for what you might ask. I would strongly suspect they're seeking love — a reassuring human connection.

As a society, we fail to remember that although persons living with dementia may be losing their cognitive powers, their capacity to experience and feel as human beings is largely unaffected. Their need to give and receive love, feel useful and worthy and maintain purpose remains unchanged.

There's some good news, however — a cultural shift is unfolding. I've seen progress, but we have a long way to go and many obstacles to overcome.

The first step occurs when we start seeing a person living with dementia as a full and complete human being. Another shift will take place when persons living with dementia are embraced and immersed into society in a way that accommodates instead of isolates. And someday, we will come to a place where persons living with dementia are no longer defined by their diagnosis; they will simply be ... Catherine or Cathy.

Research will continue to seek new medications and other medically based treatments to prevent or cure Alzheimer's and related dementias. This is important. Yet, the fight is about seeing people living with dementia as complete and whole. The fight is about training care staff in the art of relationships not simply medical care. The fight is about a nation coming together to find better ways to care for one another.

Oct. 02, 2012