New Research Informing forMemory

"When I think about my family experience, I do wish I had emphasized the things my father could still do, rather than constantly trying to figure out what was wrong with him. Until the day he died, he enjoyed playing the piano, gardening, helping out at an animal shelter and, being on the water. A more positive focus certainly would have increased his quality of life." (Mona Johnson in her blog, The Tangled Neuron)

 

Many of us with early-onset cognitive changes learned a similar lesson with regards to a parent or close relative. So now we ourselves seek ways to embrace our assets.

 

We can integrate a multitude of interventions that are best for our lives and best for the health of others and the planet. We can see our glass half full. We can choose to imagine the world as healthier and more connected, and then we can join with others toward building that healthier, more connected world.

 

We of forMemory define living well with cognitive changes as experiencing a healthy life with meaning, connectedness, creativity, and enjoyable activities, while minimizing significant functional decline. We advocate for prevention and for strategies to improve quality of life and enhance purpose in life.

 

Most of us have been diagnosed early in life (typically in our forties and fifties) with mild cognitive impairment. We want comprehensive, wrap-around opportunities based on our individual strengths.

 

We choose to work proactively for positive change in public health practices. This is thinking outside the box and it would be a blessing to pass on to future generations. In Dr. Jonas Salk's words, we would be contributing toward an “epidemic of health”.

 

The following is a summary of research that builds upon the material in our 2011 book, Pathways of Hope: Living Well with Cognitive Changes.

 

Strengthening Family Interactions

Improving emotional and interpersonal well being is usually ignored in persons at any stage of an Alzheimer's like diagnosis. It is as if we are now defined by that one scary diagnosis rather than being unique persons who can still learn and grow. Most of us recognize we have some early mood, processing speed, and communication challenges. We often take words too literally and do not express the tone we mean. Our loved ones may not understand these changes. And we and our families do not necessarily come to these health transitions with good habits of open communication, conflict resolution, active listening, and mutual decision-making. While it is true that such a foundation would best have been laid years ago, improving these skills sets now could greatly improve the quality of our lives and that of our loved ones.

 

Cognitive challenges and stress on care partners can affect the entire family. Studies have shown that care partners themselves are at an increased risk for Alzheimer's disease. Part of that may be due to their loneliness and stress.

 

The family system is important in treating cognitive changes. Studies suggest the efficacy of empowering families to practice good methods of decision-making and conflict resolution. Poor family functioning reduces care giving and contributes to care partner stress. The Gerontologist (2006) 46(1): 97-105.

 

Today's families include those with all kinds of complexities. Many others have unresolved parent child interaction issues. Others are blended families. Difficult intergenerational stepfamily dynamics can amplify isolation and stress for the family. Health transitions are challenging in themselves. Counseling and pastoral care could be very helpful. Supporting family closeness and conflict resolution could enhance cognitive health for the entire family. The Gerontologist (2005) 45(4): 445-455.

 

According to a 2005 study on Young Caregivers in the U.S., by the National Alliance for Caregiving, children who are caregivers tend to exhibit more anxiety, depression, mood swings and anti-social behavior than children not caring for a relative. Youth in low income or minority households are more depended upon for such care. They tend to exhibit even more anxiety, depression, sadness, anti-social behavior, sleep disturbance, asthma, allergies, and diabetes.

 

An interpretation of a failed French study (University Hospital in Toulouse) points out the importance of social design in family interactions. Scientists had set up a plan for persons with Alzheimer's and their care partner to receive standardized twice-annual evaluations to uncover problems. Identified problems were addressed in a standardized way, usually by generic advice to the caregiver. The scientists had expected that the project group would maintain their functionality and stay out of an institution longer. However, they were actually institutionalized at the same rate as the control group. Critics point out that in this design the role of the patient was passive, the advice to the caregiver was problem-oriented, and the entire process was standardized and not individualized. It turns out that the reason given for institutionalization in the project group was often related to caregiver concerns. In the control group it was more likely to be related to a specific medical condition. This suggests that standardized education and advice about problems can make caregivers more negative about their situation and about their future ability to provide care. There was no inquiring about abilities the patient still had and how he/she might enrich his/her life. There was no help to optimize cognitive, social and emotional well-being.

 

On the positive side the September 2012 issue of the American Journal of Psychiatry reported on an Australian study succeeding to empower caregivers to intervene with difficult behaviors without pharmacological drugs. The helpful interventions included the following:

 

 

Research on Importance of Emotional and Social Well Being

Greater purpose in life may help stave off the harmful effects of plaques and tangles associated with Alzheimer's disease, according to a study by researchers at Rush University Medical Center published in the May 7, 2012 Archives of General Psychiatry. "Our study showed that people who reported greater purpose in life exhibited better cognition than those with less purpose in life even as plaques and tangles accumulated in their brains," said Patricia A. Boyle, PhD. These findings suggest that purpose in life protects against the harmful effects of plaques and tangles on memory and other thinking abilities. This is encouraging and suggests that engaging in meaningful and purposeful activities promotes cognitive health in old age."

 

Slowly more attention is being put on such factors as connectedness to the community. Some studies indicate that loneliness likely puts people at risk for an Alzheimer's like dementia. "People who described themselves as lonely were twice as likely to develop dementia," says researcher Robert Wilson of Rush University Medical Center in Chicago.

 

Other scientific studies show how emotions are always a major part of one's health. See the work of Dr. Richard Davidson, one of the world's foremost brain scientists and Professor of Psychology and Psychiatry at the University of Wisconsin-Madison. He explains neuroplasticity by saying that essentially everything we do, the totality of our experience and our behavior, is constantly shaping our brains. Our brains are intimately interwoven with our environment, both our internal and external environment, in ways that literally shape the physical structure of the brain, down to the level of gene expression. Dr. Davidson documents many positive impacts of meditation, mindfulness, and compassion on cognitive health.

 

A 2006 meta-analysis of 20 studies on depression found that a history of depression approximately doubled the risk for the later development of Alzheimer's disease. New descriptions of major depression when associated with dementias are starting be developed by psychologists. For example, depression in connection with Alzheimer's disease tends to be variable, up and down, rather than continuous. Sun-downing is an example. Our depression also tends to cause inertia with less initiative and reduced ability to transition to another activity. On the other hand we tend to have fewer thoughts of suicide and worthlessness. These differences show that our depression symptoms should be addressed in a customized manner.

 

Trauma is also a related factor. Experiencing psychological distress was associated with a tenfold increased risk in memory decline and a 2.7-fold increased risk of developing an Alzheimer's type disease. Chronic activation of the endocrine system and its hormones may play a key role in this risk. Veterans who were Post Traumatic Stress Disorder (PTSD) patients were found nearly twice as likely to develop a dementia as compared to veterans without PTSD. Those persons who carry a common genetic predisposition appear to further increase their already increased risk for developing Alzheimer's disease if they experience high stress levels.

 

One can only wonder what the impact of domestic violence or cross-generational trauma has on those already at risk genetically or environmentally. And there are studies that indicate that those who experience trauma as victims of racial discrimination are traumatized in stronger ways and for longer periods than other kinds of trauma, and are therefore more at risk for cognitive issues.

 

In our society the “D”word of dementia or the “A” word of Alzheimer's are two dreaded words. Many in the process of diagnosis fear stigma, ignorance, and shunning by their family and friends. Many isolate themselves to avoid shame.

 

The 2012 National Plan to Address Alzheimer's Disease points out that three groups of people are unequally burdened by Alzheimer's disease: People with younger-onset Alzheimer's disease, racial and ethnic minorities, and people with intellectual disabilities.

 

The current NIH funded Synapse Project is providing more clues about social engagement. It enrolls older participants in mentally stimulating activities for many months. Participants spend upward of 20 hours a week learning digital photography or participating in quilting classes. The cognitive function of these participants is contrasted with that of older adults who engage in less stimulating activities at home. Low-key challenges at home might be working crossword puzzles or watching intellectually stimulating movies. Dr. Denise Cortis Park, PhD. of the University of Texas is now adding a walking group to compare the effects on improvement in cognition between exercise and intellectually stimulating activities. Some participants will receive both exercise and mental stimulation to see if this produces maximal improvement. http://recovery.nih.gov/Stories/ViewStory.aspx?id=418

 

Research has long shown that exercise can help people keep their minds sharp by increasing blood flow to the brain. Learning a skill and maintaining an active social life have also been shown to be good strategies.

 

Although we may not have considered socializing to be a form of intellectual stimulation, meeting new people and developing relationships requires remembering names, listening attentively to stories, and responding. “It's possible we underestimate the value of being socially engaged,” Park said.

 

Psychiatrist Scott D. Mendelson, M.D., PhD., summarized a 2011 National Institute of Health (NIH) report by writing in December, 2011:

It was found, for example, that combating diabetes, stopping smoking, treating major depression, exercising regularly and staying intellectually active can help to reduce the risk of developing Alzheimer's disease. The NIH panel was reluctant to endorse other measures that have been shown in scientific studies to reduce the risk of Alzheimer's disease. They recognized the existence of such studies but felt the evidence was not strong enough for them to lend their support. However, most of these measures are inexpensive, common sense steps that not only can reduce the risk of Alzheimer's disease but improve one's general health at the same time. Indeed, many of these measures are recommended without reservations by doctors for the good health and happiness of their patients... These other means to reduce the risk of Alzheimer's disease include: reaching and maintaining your ideal weight, controlling high blood pressure, maintaining healthy cholesterol and triglyceride levels, reducing stress, getting a good night's sleep, treating sleep apnea, seeing a dentist regularly, maintaining healthy blood levels of vitamins, such as folic acid, vitamin C, vitamin E and vitamin D, increasing intake of antioxidants, such as those found in richly-colored fruits and vegetables, maintaining friendships and pursuing a rewarding spiritual life.

 

The insights from recent research are a sound basis for our Sharing Pathways of Hope initiative, our Right foot, Left Foot, Breathe event, and our cooperation with the Alzheimer's & Dementia Alliance on its Memory Cafes.

 

Dr. Rev. Gary Gunderson writes, “We want our lives to be about life. We want to be with people who are working on life, and build connections that help us help each other ... We want to hear songs. We want to make the choices and take the risks that make possible the next generation.” (Leading Causes of Life, 2006)

 

We, with a diagnosis early in life, have an advantage of being able to plan ahead for alternative possibilities. We can encourage positive approaches to cognitive health. We can motivate health in our community, tell our stories, sing new songs, and even help compose new songs of hope and wellness.

 

We are building our team!

 

forMemory members will continue to be leaders in enacting ways to enhance cognitive health.

 

Special Thoughts from very hopeful families

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forMemory.org website was designed and updated by Jake Swamp