Presence Care Project: A New Approach for Dementia Caregivers

Mark Huntsman
By Mark HuntsmanJanuary 27, 2015

Many forms of job training out there focus exclusively on the skills involved. Where caretaking is concerned, however, that’s not nearly enough — the job is so stressful, and skills alone don’t ease the burden. Enter the Presence Care approach. Learn more about this new approach for dementia caregivers.

Facts about Dementia Caregivers

All forms of caretaking are demanding, but the role of dementia caregiver takes a special toll. The numbers are stark:

  • Dementia caregivers who suffer from clinical depression: 40%
  • Dementia caregivers who rate the emotional stress of caregiving as “high” or “very high”: 60%

Fortunately, there are a growing number of outside resources available to dementia caregivers that can help connect them to resources and other members of the caregiving community. The Presence Care Project is one of these.

Pillars of the Presence Care Project

Pillars of this new approach to dementia caregiving include:

1. Learning and Practicing Mindfulness

This is the art and science of being mindfully aware of the present moment. This form of heightened, nonjudgmental awareness  which caretakers can incorporate into their daily lives  has been shown to be very effective at reducing stress, among several other distinct benefits (more on these below).

2. Integrative Understanding

Care partners benefit enormously when they learn how to adopt “an integrative understanding of dementia.” But what does that mean  integrative understanding of what, exactly? In this case, two models of care: what the Presence Care Project calls the biomedical and experiential.

The biomedical model of care equips caretakers with “the basic understanding they need to effectively advocate, care, and plan for the persons in their care.” Meanwhile, the experiential model gives them “the tools to effectively communicate and deal with behaviors, for different dementia subtypes.”

3. Community Support

Sustaining Mindfulness Practice in dementia care requires caretakers to be a partnered team. The Presence Care Project has strategies to develop such a community. The good news is that a community can be as small as two people. It only takes a pair to be able to find strength in numbers.

The Benefits of Mindfulness-Based Care

Mindfulness is defined as “paying attention to the present moment, on purpose and without judgment.” According to the Presence Care Project, the focus of mindfulness care  also called person-centered care  is on “seeing all behaviors as manifestation of legitimate needs. The responsibility falls on the caregiver to understand and respond appropriately. Mindful role plays and other mindful enquiry practices can help gain insight.”

In describing her key influences, founder Marguerite Manteau-Rao, LCSW, ATR, puts it this way:

“To my mother, I owe the experience of being with her since the beginning of her dementia, and the ability to notice what a difference mindfulness practice made in our relationship. From feeling only grief, to a growing acceptance of her in the moment, even appreciating new aspects of her personality that became freed as a result of her condition.”

Mindfulness Tips and Techniques

By empowering caretakers to make positive changes in their mindfulness, Presence Care better equips them to keep up with the demands of dementia care. In one Huffington Post column, Marguerite Manteau-Rao shares: “tips that may save you a lot of grief as a caregiver of someone with dementia.” Among them:

  1. Start your day with a few minutes of sitting mindfulness practice, and end the same way.
  2. Incorporate mindfulness into your routines: Walking, doing chores, caring for loved ones, etc.
  3. Practice recognizing and being with your emotions, including difficult ones.
  4. Practice loving kindness for yourself, and also for your loved one.
  5. Share your mindfulness practice with at least one other care partner.
  6. Put your emotions out, either in writing, collages or other expressive art forms.
  7. Share your joys and struggles with other care partners like you.
  8. Get others to help you.

All of these are important.

When mindfulness care is established, it then leads to more positive experiences for the person with dementia, which leads to less need for behaviors, which translates to remarkably less stress for caretakers and their partners

What things do you do as a caregiver to practice being present when things get stressful? Share with us in the comments below.

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Mark Huntsman

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