Give the gift of advocacy for loved ones

Connect with an expert

Alzheimer's blog

With Mayo Clinic health education outreach coordinator Angela Lunde

Back to posting index

September 6, 2008

Give the gift of advocacy for loved ones

10 comments posted

Read comments | Post a comment

By Angela Lunde

Several of you shared your experiences around nursing home care for persons with dementia. Your stories were told candidly and from the heart and underscore both the perceptions and the realities of nursing home care for persons with dementia. I too have observed variability in the quality of care, and compassion of staff, in nursing homes and other facilities that become 'home' to persons with Alzheimer's disease or a related dementia.

I appreciate the competing challenges that nursing homes and similar facilities face. They have financial limitations with significant consequences (such as attracting and keeping desirable employees), and are under the scrutiny of regulators, that while necessary, can sometimes hamper their ability to do what is in the best interest of an individual resident. Caregivers at these facilities often manage behavior challenges, a common symptom of dementia. Persons with dementia live in a world that over time makes little sense to them and their ability to verbally communicate lessens — understandably they 'act out'. At times, even the savviest of caregivers will be challenged.

Yet, there are facilities that have implemented beautifully a philosophy of care that can offer the person with dementia the basic rights, compassion, and dignity they deserve. For example, most of the time challenging behaviors in dementia are a result of the environment (loud sounds, unfamiliar faces) as well as the way in which we, caregivers and family, approach, and communicate both verbally and non-verbally with persons who have dementia.

The book "The Best Friends Staff: Building a Culture of Care in Alzheimer's Programs" (one of my favorites) by Virginia Bell and David Troxel offers stories and ideas from real staff in facilities worldwide who are already implementing a 'Best Friends' approach with their residents.

However, the reality still exits that there will continue to be inferior care facilities across the county. Given that reality, the best gift a family member can give is to be an informed advocate for the person with dementia. In the support groups I facilitate, I often hear a family member indicate that once a loved one moves to a care facility, their job as a caregiver does not end, it just shifts from that of a hands-on caregiver to that of an advocate for the needs and rights of their loved one.

Virginia Bell, MSW and David Troxel, MPH, created "An Alzheimer's Disease Bill of Rights" in which they define the needs of people with Alzheimer's disease to maintain their selfhood and hopefulness.

They write: Every person diagnosed with Alzheimer's disease or a related disorder deserves:

To be informed of one's diagnosis.
To have appropriate, ongoing medical care.
To be productive in work and play as long as possible.
To be treated like an adult, not a child.
To have expressed feelings taken seriously.
To be free from psychotropic medications if at all possible.
To live in a safe, structured and predictable environment.
To enjoy meaningful activities to fill each day.
To be out-of-doors on a regular basis.
To have physical contact including hugging, caressing, and hand-holding.
To be with people who know one's life story, including cultural and religious traditions.
To be cared for by individuals well-trained in dementia care.

Finally, I was so touched by the words of Joanne and believe they bear repeating:

"I will always treat my husband with the utmost respect and I treasure each moment we share. We are still making memories together, just not in the same way we used to."