An Alzheimer’s Disease (or other dementia) Bill of Rights

I am re-blogging this from a blog I follow, Exploring Dementia: We can learn more when we learn it together, and find this list provided very useful. Sincere thanks to Jamie Hede for alerting me to this list and the book it came from, “The Best Friends Approach to Alzheimer’s Care.”

This is a very useful list, and Virginia Bell & David Troxel, the authors of  this book suggest that it be printed out and placed in residential care facilities where it can be read easily by both staff and visitors.

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Every person diagnosed with Alzheimer’s disease or a related disorder deserves the following rights:

1.  To be informed of one’s diagnosis.  It is not uncommon, when discussing a person’s health status and the reason for problems he is experiencing and is aware of, to soft-pedal a dementia diagnosis.  But it is vital that the person be told as early as possible in the course of the disease, so that he/she can take steps to slow down the process of the disease, and to begin to develop compensatory strategies for dealing with future problems.  We do this for someone with heart problems or cancer; why not with dementia as well?

2.  To have appropriate, ongoing medical care.  There are many great strides that have been made in recent years, with regards to the treatment of dementia.  We need to be sure that those who are diagnosed as such have access to the best care, delivered by professionals who are knowledgeable about all aspects of the disease.

3.  To be productive in work and play for as long as possible.  One of our most basic needs is to feel like we’re important in the world, that we’re making a difference.  Those in the early stages of dementia should be encouraged to keep working, and to maintain social contacts for as long as possible.  Later on, they should be allowed the opportunity to adapt their interests/desires to their current abilities.

4.  To be treated like an adult, not like a child.  Even later in the progression of the disease, the person has a rich fund of life experiences and knowledge that we should take advantage of.   Activities and care should be age-appropriate, and should not be demeaning to the individual.  For instance, a former doctor should not be asked to do finger-painting (unless he wants to, of course).

5.  To have expressed feelings taken seriously.  The person with dementia may not be able to fully articulate their emotions, but they should be allowed the chance to try.  Caregivers should be willing to listen and to encourage their charges to talk about their perceptions.  They should also be taken seriously, with feeling as if their fears and concerns are not being taken seriously.

6.  To be free from psychotropic medications, if possible.  There are times when medications are necessary to control behaviors or to deal with other psychological issues that may arise.  But caregivers should remember that there are often other methods available to deal with these problems, and that medications should often be considered only as a last resort.

7.  To live in a safe, structured, and predictable environment.  Whether it be in a home or in a long-term care facility, a person with dementia should be allowed to live in an environment that is safe and at the same time encourages them to be all that they can be.

8.  To enjoy meaningful activities that fill each day.  The person’s interests and previous experiences should be taken into consideration whenever possible.  Activities should stimulate the senses, make a person feel useful, and should provide a healthy level of exercise.  They should be upbeat and encouraging.

9.  To be outdoors on a regular basis.  Everyone deserves to have access to fresh air and sunshine, especially those with dementia.  Just being out in the warm sunshine can encourage the morale, and provide valuable stimulation for the mind and body.

10.  To have physical contact, including hugging, caressing, and hand-holding.  Sometimes the best thing you can give to someone with dementia is a hug, or to hold her hand.  This physical intimacy is valuable for so many reasons.

11.  To be with individuals who know one’s life story, including cultural and religious traditions.  One of the foundations of the Best Friends approach is that all who work with an individual with dementia be familiar with his life story.  That means not only knowing where he grew up, but what things are important to him from a cultural and even a religious standpoint.  For instance, there are some churches who celebrate the religious aspect of Christmas, but discourage paying attention to Santa Claus or the more commercial aspects of the Holiday.  To ask such a person to make reindeer ornaments would not be appropriate.

12.  To be cared for by individuals who are well trained in dementia care.    This applies to family caregivers as well as to professionals.  Family caregivers should be given encouragement and support by knowledgeable professionals.

6 thoughts on “An Alzheimer’s Disease (or other dementia) Bill of Rights

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