5 Contemplations For Dementia Care Partners

Sooner or later, during one's mindful journey, one becomes faced with a wall. One has a choice then. To keep bumping one's head against the inevitable, or to stop and contemplate the very nature of the wall itself. The wall is about the impermanence of life, and our need to face that truth. Many times, whenever grief wells up inside, as it did earlier today, I call upon the 5 Remembrances:

I am of the nature to grow old.

I cannot escape growing old.

I am of the nature to have ill health.

I cannot escape having ill health.

I am of the nature to die.

There is no way to escape death.

All that is dear to me and everyone I love are of the nature to change.

There is no way to escape being separated from them. 

I inherit the nature of my actions in body, speech and mind.

My actions are the ground on which I stand.

Strangely enough, I find great comfort in telling myself those lines. It is as if the telling is paving the way for acceptance of what is to come, or what has already happened.  During my work with those in the early stage of cognitive impairment and also with dementia caregivers, I have learned to tailor the 5 Remembrances to more specifically address the unique challenges of the dementia journey. It goes like this:

I am of the nature to grow old.

I cannot escape growing old.

I am of the nature to have ill health of body and/or mind.

I cannot escape having ill health of either body and/or mind.

I am of the nature to die.

There is no way to escape death.

All that is dear to me and everyone I love are of the nature to change.

There is no way to escape being separated from them, in either body or mind.

There is no avoiding making mistakes.

I am doing the best I can and I hold myself with compassion.

May you contemplate those words often. And may you find comfort in them. 

Mindful Presence to Ease the Dementia Journey

(cross-post from Huffington Post)

Imagine a marathon you did not sign up for, and yet, you are told you have to run the race until the end. To add to the challenge, you are to carry a heavy load on your shoulders, and the load will get heavier and heavier as the race goes on. This is what the dementia journey is like for most family caregivers... Keeping with the marathon metaphor, what is needed is a way for caregivers to develop the strength that will be required of them over the long run. The Presence Care program is a new, integrative approach that combines mindfulness and compassion practices with understanding of the dementia experience. Its goals are to ease care burden and stress, and to help foster greater well-being for both caregivers and the persons in their care. It goes like this:

1. Understand dementia.

The more we can learn about the disease, the better equipped we are to understand what the person needs and why they are behaving in certain ways. Dementia affects different parts of the brain, each responsible for different cognitive domains such as memory, language, behavior, executive function, or movement. Not all dementias affect the same domains, and we need to know which ones are impacted and what that means in terms of the person's interactions with us. For instance someone struggling with executive function will have trouble initiating tasks and will be dependent on others to get engaged into activities. We also need to guard from our tendency to position the person with dementia as less able than they really are. Many abilities are preserved throughout dementia. In many cases, emotional intelligence is even heightened.

2. Practice mindfulness.

Using Jon Kabat-Zinn's definition, mindfulness is being fully aware of the present moment, on purpose, and without judgment. The validity of mindfulness as a powerful stress-reduction tool is no longer in question. That benefit alone makes it worthwhile for stressed out dementia caregivers to undertake mindfulness practice. The other, equally important reason has to do with the way in which mindful attention allows us to notice what is happening moment to moment, that may impact the person's experience. What do we bring into the situation? What do we hear? What do we see? What is the person telling us with her body language? Armed with that awareness, we then have a chance to act in a way that is most beneficial to the person. Of course, remembering to be mindful does not come naturally. We need to train our mind to come back to the present moment. This is done by setting time aside to practice every day. Even only five minutes of sitting and paying attention to the breath can make a big difference.

3. Respond with compassion.

Compassionate care is a natural outcome of mindfulness practice. In the mindful noticing of stress for the other person lies the seed for our compassionate response. I worked once with an elder man with Parkinson's who was moved to tears once his wife learned to model her steps after his. It took them both a good ten minutes to walk the twenty feet from my office to their car. Mindful "pacing with" is a wonderful practice that helps us shift from trying to get somewhere fast to becoming fully present for ourselves and the other person, while walking together. Such walking is an example of compassionate response.

I would like to end with a note on self-compassion. With greater awareness and deeper understanding of the person's needs often comes the painful realization of our own inadequacies, and of times before when we may have unintentionally hurt the person in our care. We address this by giving ourselves frequent self-compassion breaks, a practice developed by Kristin Neff. First, we recognize the suffering in our heart: "This is painful." Then we see that suffering as a part of the human condition: "We all struggle in our lives." Third, we extend kindness to ourselves: "May I forgive myself." The dementia care journey is an ongoing adult education in mindfulness and love. If we learn to view every one of our dementia care experiences as just that, we will do ourselves a great service, and we will be more free to give the person what they need.

Is It Mindfulness or Meditation?

I get asked that question a lot, and the answer is, yes, and . . .

Yes, mindfulness is a form of meditation practice. Other names for such meditation are insight and Vipassana. Mindfulness was popularized thirty years ago by Jon Kabat-Zinn with his Mindfulness-Based Stress Reduction. The genius of Jon Kabat-Zinn has been to make this ancient form of meditation accessible to the mainstream. Mindfulness meditation is now taught in a wide range of settings including hospitals, clinics, schools, prisons, businesses, and other venues all other the U.S. and the rest of the world. It is the form of meditation that has been the subject of much attention from neuroscience research. It is the practice I teach in my Mindfulness-Based Dementia Care and other mindfulness-based programs for caregivers. Mindfulness as commonly taught these days, draws its roots from the most ancient tradition of Buddhism know as Theravada. It has been stripped of all its religious context, and only the methods for de-stressing the brain have been kept, thereby making it accessible to all, independent of their religious orientation. It is important to stress that contemporary mindfulness practice is completely agnostic. 

Other forms of meditation include zen, Tibetan, transcendental meditation (TM), Christian centering prayer, Sufism, and yoga meditation. 

Dementia Care and Not Self

Why dementia care is such a noble practice:


Not self in action . . .

And a great example of service as practice, and practice as service.

Launching Mindfulness-Based Dementia Care at UCSF

'Mindfulness' and 'dementia', two words to do with mind:

mindfulness

dementia, from Latin word demens, which means 'without mind'

Mindfulness and dementia are not just connected in words. Mindfulness also happens to be a key element of successful dementia care, working on two fronts: 1) to reduce caregiver's stress, 2) to help the caregiver be present for the person in their care. Facts gathered by the Alzheimer's Association show the extraordinary stress suffered by most family caregivers:

• 61 percent of dementia caregivers suffer from high emotional stress.

• 33 percent report symptoms of depression.

• 43 percent experience high physical stress.

• 75 percent are concerned about maintaining their health.

• Dementia caregivers are more likely to have adverse physiological changes such as high levels of stress hormones, reduced immune function, increased hypertension, coronary heart disease.

• In the last year of their loved one's life, 59 percent feel they are on duty 24 hours a day.

This goes on for an average of 4 to 8 years post-diagnosis. It is no wonder 72 percent of caregivers express relief after their loved ones die. For professional caregivers and health care providers, the stress is also intense and can lead to burnout. 

Until recently, most mindfulness-based approach to dementia care referred to Mindfulness-Based Stress Reduction for dementia caregivers. Having observed numerous times the unique challenges as well as mindfulness practice opportunities in dementia care, I realized the need for a mindfulness-based program specially tailored to dementia caregiving. Hence began the Presence Care Project, a non-profit initiative aimed at promoting a new form of dementia care training. In the Presence Care approach,  mindfulness, informed by experiential understanding of the person with dementia, becomes the foundation upon which a caregiver can rest, moment-to-moment, day after day, during the long journey of dementia. UCSF OSHER Center for Integrative Medicine has now taken on this new approach and recently launched its new Mindfulness-Based Dementia Care (MBDC) program.

MBDC builds upon the now very well proven model of Mindfulness-Based Stress Reduction (MBSR),  and combines solo mindfulness practices, interactive mindful care practices, lectures, and group sharing. Throughout, aspects of mindfulness practice and dementia care are interwoven. The emphasis is on practice during and between classes. The end goal is for participants to experience a radical shift in attitude from mostly doing and reacting, to being skillfully present for themselves and the person in their care. MBDC is appropriate for the whole range of persons involved in dementia care: family and friend caregivers, professional caregivers, elder care professionals, nurses, doctors, and other health care providers. 

MBDC rests on this central premise: mindfulness, that which helps dementia caregivers reduce their stress, is also what can help them provide the best care for the person with dementia. 

The first series of 8-week classes is starting next week and will be taught by myself and Dr. Kevin Barrows, physician and director of mindfulness programs at the OSHER Center.