The Future of Dementia Care – Renegotiating the Terms

 

I’m a baby boomer, but since both of my parents are now deceased, I’m no longer a “boomer sandwich.”  What does the future hold for boomers, many of whom still have parents?  Many of our parents are experiencing the frailties of old age and many suffer some form of dementia.  The legal issues surrounding dementia are numerous and are typically intertwined with the related medical, financial, emotional and psychosocial  issues.

I read a lovely article in the May 20, 2013 issue of The New Yorker  about the fresh approach of one nursing home (I usually refer to these as SNF – short for skilled nursing facility)  to caring for people with dementia.  In “The Sense of an Ending,” Rebecca Mead looks at the plight of many of our elders who suffer from dementia. A large number of us would rather not be reminded that this is a side effect of aging for a certain number of people in our population.  Denial or “if I can’t see it, it won’t happen to me” has not proved to be an effective strategy of coming to grips with any disease or health challenge that faces us.  This story is among other things, about one institution that offers a decidedly non-institutionalized approach to dementia care, or a person-center alternative approach.

One of the people interviewed for the article, the director of education at the Beatitudes Campus in Phoenix, refers to people with dementia as “people who have trouble thinking.”  What a contrast from the dominant theme of the medical model of our “secure units” at most SNF.

I liked the article’s focus on recognizing and honoring people’s tastes, preferences and their personal histories.  This is about the “who” of the person as opposed to the “what”  – the latter of which is focused almost exclusively on the medical problem and the loss of cognitive and other abilities.  Mead’s article also describes some of the training the staff at the Beatitudes’’  dementia facility does to better empathize and understand people with dementia, and this honors the idea that we have something to learn from people with dementia.  Seven insights we can gain are described here.

The person-centered approach was formulated by the late Tom Kitwood, a British psychologist and pioneer in the field of dementia care.  His approach focuses on the maintenance of well-being in persons affected by dementia and is concerned with psychological needs including:

  • maintaining a person’s identity
  • engaging the persons or supporting them in come meaningful tasks
  • providing comfort (seeing the human dignity in each person, expressing warmth and acceptance)
  • recognition of feelings and for relationships – past and present

Recognizing these in a person with dementia does good not only for the person with the disease but also the loved ones and family members.  I often think of dementia as “contagious” because it does not affect a single person experiencing the effects of the disease or condition, rather it has a ripple effect on others.  Dementia is often the “beginning of the end” is it is often accompanied by a host of other ailments and is often a terminal illness

In the meantime, we have a war on Alzheimer’s in this country, no doubt due in no small part to the “silver tsunami” of baby boomers who will be at risk for the disease or some form of dementia.  Our obsession with science and medical advances  to come to our rescue is readily apparent here.  I liked Professor Partha Mitra’s critique of the multibillion dollar neuroscience effort to draw up a “brain activity map.”  Read it on Scientific American online here.

Kitwood’s work has been around for many years, long enough for the ideas to be kicked around, rejected and adopted in parts in many parts of the world.  The notion of personhood is a powerful one and can help to reassess the appropriate limits of our medical model of dementia care in this country.

People with dementia challenge us to engage with them on their terms, how we can do that is up to us, what we have to learn from them.  I have once or twice joked (yes, part of my penchant for jokes about death and dying and all manner of serious topics) that many people with dementia are people who are typically better than most of us at living in the present moment.

This is not to say that we ought to give up looking for some preventive measures or a “cure” for some types of dementia, this is a reorientation of the focus of care.  Our system of protective proceedings, in Colorado known as guardianship (for an incapacitated person), focuses exclusively on what the person has lost and is no longer able to do for themselves.  The substituted judgment which is the model for decision-making is based on a vague notion of “best interests” which purports to be some standard “out there” that is general and vague enough so that it could apply to most anyone.

Some things are refreshing when examined in a different perspective.  What about applying the “golden rule” (I prefer Rabbi Hillel’s version  “what is hateful to thee, do not unto thy fellowman”) in guardianship proceedings to determine who makes decisions and what type of living arrangements are appropriate?  The person-centered approach recognizes there is still a person there, albeit one affected by the ravages of dementia, but who is often able  to be “held in their identity.”  I think this approach and others like it have much to teach us – whether we work in the legal, medical, mental health or financial worlds – about how to live and what and whom to value.

©Barbara Cashman     www.DenverElderLaw.org

Who Is Taking Care of the Caregivers?

Did you know that according to the 2012 Report by the Alzheimer’s Association, over 15 million Americans provide unpaid care for a person with Alzheimer’s or some other form of dementia? f  The report, at page 27, also states that 80% of the care provided at home is given by family caregivers and that fewer than 10%  of older adults receive all of their care from paid workers.  The study also shows, in colorful bars, the proportionally larger number of caregivers of people with dementia (as compared with caregivers of older people) who provide assistance with activities of daily living (getting out of bed, dressing, toileting, bathing, managing incontinence, and feeding) along with the larger number of those dementia caregivers for both the 1-4 years and the 5+ years categories for the length of time of caregiving.  Page 31 of the report demonstrates that dementia caregivers suffer from 1.5 greater emotional stress level than the other elder adult caregivers, while the physical stresses were slightly lower. This report is very eye-opening.  One of my first questions about this is  – who is taking care of the caregivers?

Fortunately, the Alzheimer’s Association of Colorado offers assistance in the form of classes and workshops for people who are touched by Alzheimer’s and other forms of dementia.   A helpful list of resources available in Colorado can be found here.  Dementia care is stressful on a number of levels, so you may want to make sure that financial, legal and medical arrangements are already in place for the affected person.

So how do dementia caregivers of family members cope with the stress? I am a regular practitioner of yoga, so I was pleased to see this post on “Yoga for Caregivers: Meditation May Lower Depression, Improve Brain Functioning in Dementia Caregivers of 3/13/2012 available here.

Many times a better understanding of the behaviors of people with dementia can be helpful as can adjustments to communication techniques.  The Family Caregiver Alliance offers the following 10 tips:

1.      Set a positive mood for interaction – your attitude and body language communicate your feelings and thoughts stronger than your words.

2.      Get the person’s attention and limit distractions and noise, use nonverbal cues and touch to help keep her focused. If she is seated, get down to her level and maintain eye contact.

3.      State your message clearly, using simple words and sentences. Speak slowly, distinctly and in a reassuring tone. Refrain from raising your voice higher or louder; instead, pitch your voice lower. If she doesn’t understand the first time, use the same wording to repeat your message or question. If she still doesn’t understand, wait a few minutes and rephrase the question. Use the names of people and places instead of pronouns or abbreviations.

4.      Ask simple, answerable questions, and ask them one at a time (those with yes or no answers work best).

5.      Listen with your ears, eyes and heart and be patient in waiting for your loved one’s reply. If she is struggling for an answer, it’s okay to suggest words. Watch for nonverbal cues and body language, and respond appropriately. Always strive to listen for the meaning and feelings that underlie the words.

6.      Break down activities into a series of steps. This makes many tasks much more manageable.

7.      When the going gets tough, distract and redirect. When your loved one becomes upset, try changing the subject or the environment.

8.      Respond with affection and reassurance. People with dementia often feel confused, anxious and unsure of themselves. Further, they often get reality confused and may recall things that never really occurred. Avoid trying to convince them they are wrong. Stay focused on the feelings they are demonstrating (which are real) and respond with verbal and physical expressions of comfort, support and reassurance. Sometimes holding hands, touching, hugging and praise will get the person to respond when all else fails.

9.      Remember the good old days. Remembering the past is often a soothing and affirming activity. Many people with dementia may not remember what happened 45 minutes ago, but they can clearly recall their lives 45 years earlier. Therefore, avoid asking questions that rely on short-term memory, such as asking the person what they had for lunch. Instead, try asking general questions about the person’s distant past—this information is more likely to be retained.

10.  Maintain your sense of humor. Use humor whenever possible, though not at the person’s expense. People with dementia tend to retain their social skills and are usually delighted to laugh along with you.

The tips are from  http://www.caregiver.org

Some of the distressing facts about caregiving are According to the American Medical Association, 16 percent of caregivers have worsened health after they’ve begun caring for someone. And about half of Alzheimer’s disease caregivers go on to develop psychological distress.  So please remember, if you are caring for a person with dementia or want to help support someone who is providing that care, there are many sources of support available, so please take good care of the caregiver and get help if you need it.