The RENEW program offers a range of group-based services, including cognitive skills training, support groups, caregiver training, and general wellness/lifestyle programs. While there are some medical treatments that modify the course of neurologic diseases, the RENEW program recognizes the need for coordinated, interdisciplinary, and psychosocial supportive care services to improve the social, physical, and mental aspects of patients’ lives. In addition to group-based services, we are also dedicated to creating a community where patients and families can come together to support one another.
Here are examples of ongoing groups within the RENEW program for 2019-2020:
- Executive Function Skills Group
- Memory Skills Group
- Caregiver Skills and Wellness Group
- “My Healthy Brain” Group
For more information about the RENEW program and patient groups, please email: BrainHealthGroups@bwh.harvard.edu
First it’s shock and disbelief – So many things that were effortless become laborious or impossible. You assume you can overcome it, or that it will heal with time….and then it doesn’t. Words which used to come easily now take focus and concentration – Understanding what others say is a challenge, particularly if ideas are complex or the speech comes too quickly. You realize that you can only capture part of what is said and can embarrass yourself if you repeat something already discussed or misunderstand someone’s point of intent.
Formerly a strong contributor with creative ideas and a love of sharing and teaching you find yourself shrinking into the background, afraid that others will notice your struggles, that you will lose your train of thought in the middle of an idea and then others will know. They will recognize your struggle, grow impatient with your verbal stumbling, fail to recognize that the strong ideas are still inside even if thee ideas are constipated and have trouble coming out. Yes, there is fear – fear that others will think less of you, dismiss you, devalue your ideas and statements, no longer seek you out. Better to keep quiet.
And there is shame – shame that you feel less than others, can’t perform at your previous level fear of being judged. There is pain that others are not recognizing your struggle, the effort that goes into each conversation, or into not having that conversation. It is easier to hide.
And on adapting:
It takes time. You learn to compensate. You bargain with God and with yourself. With my first head injury, there was some recovery and I made peace with the fact that I could do less, perhaps half of what I did before, before my brain would get too exhausted. I found new pursuits, rushed into spirituality and hands on healing – which took less brain power or at least a different kind where my intellectual deficits would be less in my face. And then I developed new competencies – I was told that I had become a strong energy healer, developed new friendship networks where I felt valued I took walks with my dog and communed with him, began to write and later started a writing group. Life was not bad.
And then, sometime between 2018 and 2019 another head injury or damage from a virus or drug assaulted my brain and robbed me of many of my gains and other faculties. I found myself unable to keep track of more than one thing, perhaps two things at a time when lucky. I would lose the thought in the middle of a task, couldn’t find where I had placed things or remember my intention….or even parts of my history. I could only recall things if someone cued me first – yes the ideas and thoughts were still inside, but I couldn’t access them independently. And then I found out that I couldn’t access memories, unless cued. When trying to plan or make decisions I was unable to recall and , keep in mind, and weigh the various factors involved in making a plan or decision (something I previously excelled at). I couldn’t make decisions because I forgot what I needed to consider. I became paralyzed. And at home, I was struggling so hard to compensate for this new flood of difficulties that I was unable to relax or find joy, or truly connect to someone. I spent that bulk of my time in physical and psychological pain. My partner increasingly took over in ways that were different from my desires. I became increasingly despairing and distant. Ultimately for that and other reasons, my relationship of 30 years failed.
As I live in the world now, still trying to adapt to divorce and live in an isolated COVID world I find myself wondering how to be resilient and once again adapt. I realize that my functioning will be at a even more diminished level. I try to deal with the pain by denying, ignoring, telling myself that small steps are signs of progress, are to be celebrated….and then I get hit in the face with my deficits. Things sneak up on me, as I realize, that another, previously a colleague or friend, is so much faster,so much more tuned in than, so much more competent than I, that I am merely fooling myself. And then the pain is intense. I am at a loss about how to console myself in a way that will be lasting and not simply a deception. I am still working on that as I write this.
How to adapt and be resilient:
The bottom line is love and caring – I still have the capacity to do that if I’m not too depressed, I need more of that. It is important to connect with others, offer to be helpful especially on good days when I feel capable. It is important to stop hiding, to be honest with others about my struggles, without leading with feeling sorry for myself.
Even though my skills are diminished I still have a love of music. I try to engage and absorb myself in the melodies without being too judgmental about my slowness or deficits in playing. I tell myself that music is good for my brain, that I should stay with the playing even though it’s frustrating and difficult because it will help the neurons to connect. And the melodies and musical vibration bolster me.
I exercise, to reduce stress and improve blood flow to my brain. I immerse myself in nature, which is particularly beautiful this time of year (and draws me outdoors outside of my despair and loneliness). I call others when I need to connect and get help pulling myself out of my depression. On “good days” I acknowledge and celebrate my skills that still remain– my sense of humor (when I’m not too depressed) my curiosity about the world in general and about others,. There is my desire to know others and help them on a deeper level (left over from my therapist days). I acknowledge and celebrate my continued ability to conceptualize. So some things remain and are strong. I wonder if that will be enough to help me find a new future.
The Brain Health Program (BHP) operates in many ways to support providers at the BWH Center for Brain/Mind Medicine (CBMM) in their care for patients. Patients who are at risk for cognitive decline/dementia or who already have impairment, often interact with a multi-disciplinary team that can include neurologists, neuropsychologists, neuropsychiatrists, and social workers. Each of these providers is able to bring complimentary expertise to the table. BHP faculty represent these different disciplines and their leadership in brain health is able to enhance the Center’s collaborative, team-oriented approach.
A. Evaluation: Brain health education and promotion of positive behavior change is at the center of care for patients who are at increased risk for developing cognitive impairment and dementia. This population includes adults with strong family histories of Alzheimer disease and related dementias (ADRDs), existing cardiovascular risk factors like high blood pressure and elevated cholesterol, women who are in peri-menopause, and those with medical conditions like sleep apnea or hypothyroidism, among others. Evaluation of these patients includes assessment of baseline cognitive status, consideration of overall health and wellbeing, and review of dementia risk factors that can be addressed.
B. Treatment: CBMM providers offer strategies for dementia risk reduction and ongoing monitoring and support to help patients adopt and maintain healthy brain behaviors. Providers also keep patients up-to-date about clinical research opportunities, including novel medication trials and lifestyle/behavior interventions, like the Brain Health Champion study, aimed at reducing risk of cognitive decline.
C. Education: Faculty of the BHP are developing evidence-based materials about brain health for CBMM providers to use in the education and care of patients. The BHP is also working with the Outreach and Education team at the affiliated BWH Center for Alzheimer Research and Treatment (CART) to develop brain health educational materials, including the “Roadmap to Prevention” and other guides.