Tuesday, January 03, 2017

How to Help Someone with Metastatic Cancer

This topic is on my mind because I am thinking of two friends with metastatic cancer, and I know that everyone can think of someone facing cancer in their lives. In both cases, these two people are under the age of 50 and they have young children or children in their early years of adulthood.  I suppose that's why I want to write about this because I am also at a similar phase of my life with my family.  I cannot pretend to understand what these friends are going through, but I can imagine that I would be very fearful and sad to think about my children coping without me.  There would be so much I would want to say now and in the future to them. He or she should be given the chance to record stories, memories, and advice. Encourage him or her to do so---it is a priceless gift and it should not be delayed. Despite very good treatment plans, it is a smart idea, whether someone is perfectly healthy or facing cancer, to capture life stories and key wisdom. They can also share the journey through treatment and document a "survivor story" too.  You can help with a digital recorder or video on your phone or any other method that is convenient to you and your family and friends.

If the person may need more help or you're worried that you would rather have assistance with the story recording, LifeBio is here with our main purpose of helping thousands of people say what matters most to their families and friends. LifeBio asks biography questions or survivor story questions that help elicit the important things that need to be said. Sometimes it takes the form of a one hour or two hour phone interview and then it is transcribed and turned into a Legacy Book....plus the audio is uploaded and accessible for the family to listen to again someday.  Others have used our online system at www.lifebio.com to type out their memories (sign up and try it for free), following the questions provided. Still others have used the Memory Journal book as something they can carry with them and fill out while they are in waiting rooms or just when there is a little quiet time.  Family and friends can assist with the typing of the story or the writing in a book, of course.  If a shorter process is needed, other options are available that could be completed quickly.

Please let us know if we can help you help someone with metastatic cancer. We are here for the primary reason to help those with life threatening illnesses or those reaching advanced age.  You can reach us at 1-866-LIFEBIO or 937-303-4576 or email info@lifebio.com.  See more at www.lifebio.com.

Research Roundup on Reminiscence and Life Review

For thousands of years, people from diverse cultures around the world have passed on their traditions, beliefs, and advice through the telling of stories. When writing a life story or writing an autobiography or just sharing some key memories with family or friends, stories….

explained lessons of life
how to survive in difficult circumstances
why things have happened the way they have
and offered tales of great adventure, tragedy, or love.
People reminisce for these eight reasons according to Dr. Jeffrey Webster who documented the Reminiscence Function Scale: 1) Teach/Inform; 2) Conversation; 3) Boredom Reduction; 4) Death Preparation; 5) Identity; 6) Problem Solving; 7) Intimacy Maintenance; 8: Bitterness Revival.

In addition to the wisdom passed down, we now know that reminiscence and life review is a proven way for older adults to gain self worth, learn more about themselves, and give the gift of their stories to the next generation. Recalling life stories or even writing an autobiography should be encouraged at any juncture in one’s life, but primarily as people reach end of life.

There are a number of studies that have shown that reminiscence and life review affects people’s lives in extraordinary ways. We will explore some of the outcomes from those studies.

Why Reminiscence is an Important Part of Healthy Aging

Over 100 studies in the last decade prove that reminiscence is an important part of healthy aging and wellness. Sources: Critical Advances in Reminiscence Work, Jeffrey Webster and Barbara Haight, 2003. Transformational Reminiscence, John Kunz and Florence Gray Soltys, 2007. Reminiscence and life review has been found to:

Increase life satisfaction
Lower or prevent depression
Engage people with dementia
Promote social interaction
Reduce chronic pain
Assist with cognitive orientation
Improving staff/resident/family relations
Reminiscence and Wellness Work Hand in Hand

Studies have shown that older adults experience remarkable results when reminiscence and life review is encouraged.

Decreases Disorientation, Improves Social Interaction

A study demonstrated it is possible for older people with dementia to reminisce and that this is meaningful for them in particular, because of the losses associated with dementia. Another related case study used life review with groups of people with Alzheimer’s disease. They were assigned to groups with some participating in life reviews and others did not. Results showed significance for life review groups in decreased disorientation and improvement in social interaction.

Increases Life Satisfaction

With female nursing home residents, a study randomly assigned participants to a reminiscence group, current events discussion, or no treatment group. The results showed significant increases in life satisfaction in the reminiscence group.

Improves Resident/Staff Relations

Nursing home residents were interviewed with and without staff present and in either a reminiscence/life review format or a format more focused on the present time. The attitudes of residents toward staff improved with reminiscence and with the staff’s presence at interview.

Reduces Geriatric Depression

Newly relocated nursing home residents underwent a study to examine if life review could prevent clinical depression. Significant positive results were shown in reducing depression at the short-term testing stage with an additional decrease in depression and hopelessness at one year.

Increases Orientation, Competence After Relocation

A case study examined the use of a life review program with newly-relocated nursing home residents and it was found to decrease depression, while increasing orientation, perceived competence, and social interaction.

Increases Sense of Purpose and Meaning

After group therapy with older adults in long-term care setting over an 8-week period, this study found that the two treatment groups were significantly different from control group showing increased sense of purpose and meaning in their lives.

Is the Telling of Life Stories Key to Human Development?

Noted psychologist Erik Erickson examined human development by looking at the conflicts we face at each stage of life.

In Middle Adulthood (40s and 50s), we are most concerned with Generativity (vs. Stagnation). Generativity, when it is developed, is the establishment and nurture of the next generation. Through stories, we help the next generation know what matters most and seek the best for their lives. There is a concern and commitment to family that’s passed on. Storytelling is vital for building generativity.

In Later Adulthood (60 years-74 years), Erickson documents the psychosocial crisis as Ego Integrity (vs. Despair). Ego integrity is the ego's accumulated assurance of its capacity for order and meaning. Despair is signified by a fear of one's own death, as well as the loss of self-sufficiency, and of loved partners and friends. At this stage, the central task for people to pursue is introspection because they must decide what will make their lives fulfilling and come together in a community. This stage can result in a development and sharing of wisdom—especially through storytelling.

In Later Adulthood, we’re concerned with life but facing the fact that death will come. According to Erickson, people in this stage of life should have new intellectual challenges and take on new roles and activities. Writing one’s autobiography fits the bill by providing that challenge but also giving them a chance for the necessity of introspection. Through life review, they may also decide, “What’s my next pursuit?”

In Old Age (75 Years-Death), the psychosocial crisis is Immortality (vs. Extinction). This phase is focused on reflecting back on life. In this phase of life, Erickson cites the positive outcomes of life review, accepting death with a sense of integrity and without fear. Those who are successful in this phase do review and feel proud of their accomplishments and have a strong sense of integrity. Those who are unsuccessful during this phase will feel that their life has been wasted and will experience many regrets—leading to bitterness and despair. The developmental task, according to Erickson, is to cope with the physical changes of aging while seeing the “big picture” of life. Through reflection, individuals will see and know their own wisdom.

Autobiography = Chocolate? What the Experts Say...

Dr. Robert Butler, author of Why Survive? Being Old in America, coined the term “life review” fifty years ago. Before that time, researchers and physicians saw reminiscence as just a stepping stone toward senility and dementia. He disagreed with this belief and proposed that, as people age, reminiscence and life review were a normal part of healthy aging. Now large bodies of research show the positive outcomes from reminiscence and life review.
Dr. Gene Cohen, author of The Mature Mind, saw reminiscence as a critical brain activity and he remarked, “Autobiography for older adults is like chocolate for the brain.” Cohen cited a 2003 study by Eleanor Maguire and Christopher Frith that performed brain scans on people in their 70s and in their 30s while they were reminiscing. The found that the entire hippocampus is “lit up” in older adults, while 30 year olds only utilize one small part of the left hippocampal region.
Dr. Andrew Weil, author of Healthy Aging, encourages older adults to keep a record of wisdom, values, and life lessons in an ethical will, or heartfelt letter to loved ones. He writes, "An ordinary will … concerns the disposition of one's material possessions at death. An ethical will has to do with nonmaterial gifts: the values and life lessons that you wish to leave to others…At critical points in your life, take your ethical will and read it over. Add to it. Revise it and share it with people you care about. An ethical will helps you organize your own experience and focus on who you are. It's a spiritual inventory about what you want to pass on to others." Life stories can lead to a letter from the heart.
Reminiscence Touches All Seven Dimensions of Wellness:

Physical - The hippocampus is “lit up” in 70-year-old subjects who were monitored while reminiscing, promoting brain fitness in this way.

Social – Assists people in getting to know one another whether they are new neighbors or already friends.

Emotional – Empowers people to review their accomplishments and remember the joys and challenges of life.

Vocational – Helps older adults have a job to do by giving the gift of their wisdom and values to their children, grandchildren, or other loved ones.

Spiritual – Explore and see the “big picture” of their lives and explore one’s spirituality and beliefs.

Environmental – Improves the environment of elders by surrounding them with people who see more as people and less as patients.

Intellectual – Provides ample opportunities for learning about one’s self and exploring creativity through personal or group storytelling.

Background on Alzheimer’s Disease and Dementia

Over 5 million people in the United States are living with Alzheimer’s Disease today. Alzheimer’s Disease is now the 7th leading cause of death. More than 50 percent of residents in assisted living and nursing homes have some form of dementia or cognitive impairment, and the numbers continue to increase. The national Alzheimer’s Association has a number of recommendations for caring for people whether they live in a community setting or their own home. Social interaction is critically important and people facing with dementia do have a need for meaningful activities that build a sense of community and are fun. The Alzheimer’s Association recommends that families and the person with dementia should summarize the individuals’ life story including past experiences, personal preferences, and current capabilities.

Number of People with dementia (Alzheimer’s Association)

Alzheimer’s is the most common form of dementia affecting people over age 65.

“The number of Americans living with Alzheimer's disease is growing — and growing fast. An estimated 5.4 million Americans of all ages have Alzheimer's disease in 2016. Of the 5.4 million Americans with Alzheimer's, an estimated 5.2 million people are age 65 and older, and approximately 200,000 individuals are under age 65 (younger-onset Alzheimer's). One in nine people age 65 and older has Alzheimer's disease. By mid-century, someone in the United States will develop the disease every 33 seconds.

These numbers will escalate rapidly in coming years, as the baby boom generation has begun to reach age 65 and beyond, the age range of greatest risk of Alzheimer's. By 2050, the number of people age 65 and older with Alzheimer's disease may nearly triple, from 5.2 million to a projected 13.8 million, barring the development of medical breakthroughs to prevent or cure the disease. Previous estimates based on high range projections of population growth provided by the U.S. Census suggest that this number may be as high as 16 million.”

What is Retrogenesis and Why Does it Matter

Dr. Barry Reisberg developed the term “retrogenesis” to describe the changes that Alzheimer’s patients experience. People experience life in reverse order, regressing toward childhood. They may lose the ability to manage their checkbook, dress themselves, bathe regularly, control their bladder and bowels, or speak-- reversing the order in which those skills were acquired as a child. Because events from childhood will resurface potentially as time passes, the importance of knowing past events through understanding a person’s life story —both positive or negative times of life—can be useful in delivering the best quality of care. Seeing the elder as a person who is moving backwards in time may help explain different behaviors and lead to understanding and love instead of criticism and ridicule.

Recommendations for Those That Work in Memory Care

Know the person’s life story – with the help of this person and his or her family members – in order to connect and cue them. The person will have a sense of comfort when they feel that they are known and understood, and it will help caregivers be more confident and patient.
Hold attention for short periods of time to gather memories. Asking just one question and listening intently for the answer…or giving the person choices for their answer may be helpful. “Tell me about a tree when you were a kid. Did you have an apple tree or a maple tree or another kind of tree?” Group settings may be ineffective when doing personal reminiscence work.
Use all the senses to the fullest – bring object associated reminiscence works. Bringing a branch of a tree, a leaf, or a pine cone will help prompt a memory of a tree when the person was younger.
Try “Outside the box” activities. Watching you do activities is okay too. Would a former scientist or professor enjoy watching or participating in a science experiment? Could someone who had a horse like to see children getting pony rides? If the life story is recorded, with the senior enjoy someone reading their stories to them and looking at the pictures?
LifeBio’s MemoryBio—a resource with over 200 photos and questions ready for a life enriching activity to prompt discussions (digital and physical product).
Involve families because they should see reminiscence as an important part of ensuring quality of care and quality of life. If we don’t know someone, we can’t care as much for them. Knowing more details can allow us to connect in a more meaningful way.
Ensure there is genuine, loving one-on-one communication. Elders with memory impairment still know when they are being ignored or patronized in a conversation. Truly listening is a gift you can give to those with dementia—even if some things or all things don’t make sense.


“I truly believe that true person-centered care only happens when people feel they are deeply loved and valued in their community—whether they are staff members or residents. When people know more about each other (through sharing those unique and personal life stories), they can really become as close as family…maybe even closer. I know we can reach a new level of caring. Individual’s stories become like gold—especially as one ages and experiences loss. When older adults finally are given an opportunity to have someone really listen and help record their stories and wisdom, they feel a new sense of peace and happiness. What a gift.”

--Beth Sanders, Founder & CEO, LifeBio.com

The Impact of Reminiscence Programming
on Overall Operations in Senior Living or Health Settings

With the continuing evolution of person-centered care and the importance of achieving quality by providing more individualized approaches in active adult, assisted living, skilled nursing, CCRC, and home care settings, communities have an increasing interest in reminiscence and life review programming and see the potential impact on overall operations.

In competitive markets, current or prospective residents and their loved ones have very high expectations for service that, in turn, require the community’s staff to have an even deeper knowledge of each person’s background, events, and values in order to meet and exceed these expectations. At the core, relationships matter—whether meeting a person for the first time, speaking with a family member, in everyday interactions, or when facing end of life.

The community sees a life story program as a critical part of person-centered care or their culture change journey. They do NOT see a life story program as just an activity but it becomes part of the process for admissions, marketing, social work, and even nursing care. Upfront training of staff members ensures the program’s success and helps it reach as many participants as possible.

The elder community involves the community at large as much as possible. Family members, students, and volunteers are easily plugged into the process, trained, and empowered to tell a resident’s story. Communities use all different types of media to meet the needs of their residents including a book of questions everyone can use, a web-based system, video/audio recording options, and one-on-one and group activities. Flexibility and an ongoing commitment from all levels of management, and especially executive management, are keys to success.

"All too often we learn all of these wonderful things about our residents at their memorial service after it’s too late. We need to learn more about who they really are while we have the opportunity--when we are lucky enough to be chosen as their caregivers. We need to build on the relationship between caregivers and elders. What better way to accomplish this than by helping them write their life stories?”

-- Donna G. Life Enrichment

There are a number of ways that focusing on the life stories of residents leads to improvements in the overall operations of a community:

WELLNESS & HEALTH CARE

Reminiscence is found to touch all dimensions of wellness. In addition, as the life story is learned, it helps to improve relationships between staff and residents. It is important to promote engagement and ensure people are not just focusing on physical fitness but on overall wellness.

Social Wellness – connecting people to promote friendship, seeing what they have in common
Spiritual Wellness – seeing the “big picture” of life and the importance of faith and values
Emotional Wellness – exploring the joys and challenges, strength from overcoming obstacles
Intellectual Wellness – learning about one’s own life and the life of peers, writing, sharing
Physical Wellness – reminiscence found to lower physical pain and feelings of depression
Vocational Wellness – recording life stories gives people an important life pursuit

Genetics plays an important role in successful, active aging and wellness, and the choices people make every day are critical too. Cognitive stimulation matters, but the Dana Alliance for Brain Initiatives also noted that physical exercise, diet, social connections, how we manage stress, and seeing the self and the world in a positive way are also important too.

Dr. Robert Butler, author of Why Survive? Being Old in America, coined the term “life review” fifty years ago. Before that time, researchers and physicians saw reminiscence as just a stepping stone toward senility and dementia. He disagreed with this belief and proposed that, as people age, reminiscence and life review were a normal part of healthy aging. Now large bodies of research show the positive outcomes from reminiscence and life review.

MEMORY CARE & BRAIN FITNESS

Reminiscence is believed to stimulate the hippocampus area of the brain where memories are stored. Reminiscence and recording the life stories are critical for people experiencing Alzheimer’s or another form of dementia. The detailed information gathered could be vital to current and ongoing delivery of service and care.

Going the extra mile in providing the best possible tools for brain fitness and memory care could make the difference between someone living independently and someone needing higher, costlier levels of nursing care.

Personal interaction matters too in promoting positive brain health. “There’s a lot of evidence that other people are the most unpredictable things you can encounter. So activities that have you engaging with other human beings are a fantastic form of brain exercise.” said Lawrence Katz, Neurobiologist.

HOME CARE & HOSPICE

Communities are expanding their services with home and community-based services and hospice. Companionship services offered in non-medical home care can be enhanced by providing reminiscence tools to use with clients. During the time spent visiting, there is the chance to do something meaningful and life changing by reminiscing and recording the older person’s life story—a priceless gift to the family. Providing simple ways for people in hospice care to create an ethical will or to answer at least a few autobiographical questions is much appreciated when it is possible.

“I wish I would have known that about him when he was alive,” is too often a refrain heard after staff (and even family members) attend a memorial service. Knowing more about someone’s life can lead to appreciating the whole person’s life journey. This person was a child, a teenager, a worker, a parent, and a grandparent. They experienced joys and challenges through the years. As staff members see the common experiences and feelings and amazing life events in clearer view, it commonly improves service and care. In addition, learning more about the person’s past can only lead to more compassion at the end of life. Life review typically helps the dying person experience more love, more hope, and more peace when they are reminded of their accomplishments, their family relationships, their beliefs, and more.

OUTREACH & MARKETING

Not every community today offers a comprehensive, consistent reminiscence program—therefore this innovative approach differentiates communities from their competitors and demonstrates a very high level of caring. As in-depth life stories are captured, there are a number of great publicity opportunities that result via newspaper, TV, radio, and online. In some progressive communities, the waiting list members or prospects are even invited to participate on campus in autobiography writing classes to build relationships between current residents and people who may be making a decision about moving to the community soon.

COMMUNITY LIFE & ACTIVITIES

Reminiscence provides interesting lifelong learning classes and fun activities that can be easily adapted for independent living, assisted living, skilled nursing, adult day services, or memory care. The key to excellence is breaking out of standard activity patterns and the “same old, same old” conversation patterns where weather, health, sports, and food topics dominate. Expanding communication builds new, genuine friendships and a dynamic environment. Conversations should move to a rich mix of topics -- personal accomplishments, childhood memories, historical events, hobbies, values, and aspects of daily life that this person has always loved. Innovative communities are being intentional about relationship building. Reminiscence activities take on a new dimension when they include recording the personal memories for the resident and his or her family as well. Writing in a journal, giving residents online access to type a memoir, or pairing them with a student are all options. Also, residents in many communities can lead reminiscence classes or serve in a leadership role in the overall reminiscence program. Former teachers, social workers, or clergy are excellent facilitators of autobiography classes.

FAMILY VISITING & COMMUNITY VOLUNTEERS

Family members struggle to know what to say when they visit. Reminiscence tools help them have a reason and structure for visiting. Adult or youth volunteers are involved in capturing memories and building relationships with residents in nursing homes or assisted living. It is a “win-win” situation when residents can volunteer to share their life stories and middle or high school students can volunteer to help in the recording process via the web, in journals, on storyboards, or through video. Youth are mentored by the older adult in the process, learning important communication skills along the way.

COMMUNITY BENEFIT & SOCIAL ACCOUNTABILITY (NON-PROFITS)

Because of the numerous opportunities for employees to volunteer as part of a community reminiscence program OR because the community-at-large can be provided with free presentations, such as a “Tell Your Story” workshop, there are a number of ways that a senior living community can give back to their neighborhood, city, county, church partners, etc. Non-profit retirement communities can reach out to in-home caregivers, YMCAs, and other senior services and community-based organizations to provide free informational sessions on recording a biography to help in building relationships, keeping people engaged in the community, and touching all dimensions of wellness.

HUMAN RESOURCES & INTERNSHIPS

Attracting and keeping the best talent is always a struggle. Many people who enjoy working in long-term care or community settings had positive experiences with older adults in their lives when they were in their youth. The potential is there for a new generation to gain immensely from the wisdom and experience of older adults—and to choose a career serving older people as a result. With the growth in the aging population, this is vital for the future. In addition, communities that build genuine relationships between staff and residents typically experience lower turnover.

SUMMARY

Organizations and communities should consider the beneficial outcomes from incorporating a reminiscence program. Although every community is different, positive results from capturing life stories should be expected.

CONTACT:
For more information on Life Bio’s programs for elder communities and community-based organizations, please call 1-866-LIFEBIO or email us at info@lifebio.com. Please request an information packet on how to implement LifeBio in your community.

SOURCES:
Alzheimer’s Association - http://www.alz.org/facts/overview.asp#prevalence
Webster, Jeffrey & Haight, Barbara. Critical Advances in Reminiscence Work. Springer Publishing. (2002)
Weil, Andrew. Healthy Aging. (2005)
Dementia Care Practice Recommendations for Assisted Living Residences and Nursing Homes. Alzheimer’s Association. (2006).