Struggling with Alzheimer's Disease

Many families struggle with Alzheimer's Disease and other dementias. It is not just getting old that causes dementia. The mind just isn't working properly. While scientists work to find a cure, families need to better understand the disease and how to help their loved ones.

ChangingAging.org compiled some noteworthy resources, including the Alzheimer's Association.

They also recommend The Myth of Alzheimers:

"Perhaps the most profound website challenging the conventions of Alzheimer’s disease is TheMythofAlzheimers.com — “What you aren’t being told about today’s most dreaded diagnosis.”

The Myth of Alzheimer’s is a bold and direct challenge to the multi-billion dollar juggernaut that is the status quo of Alzheimer’s thinking, marketing and research. It’s an alternative approach seeking to humanize the way we think about brain aging and strengthen the care and solidarity provided to people affected by memory loss."

Community Fairs - Financial Assistance and Law Day

Many community organizations provide information and assistance for older adults, their family members, and other informal care partners. The Baltimore CASH Campaign is sponsoring Money Power Day 2011 this Saturday, April 2, 2011 from 9 am - 3 pm at Poly-Western High School (1400 W. Cold Spring Lane, Baltimore)

Money Power Day is a FREE annual event providing Baltimore area residents and workers with quality financial services including:

• Free tax preparation


• Free credit reports and credit counseling


• Customized financial planning


• Housing counseling


• Screening for public benefits


• Financial programs for youth.

The Bar Association of Baltimore City is holding its 20th Annual Law Day for Seniors program on Saturday, April 16, 2011, at the Edward F. Borgerding District Court Building, 5800 Wabash Avenue, from 8:00 a.m. until 2:00 p.m. As in past years, the purpose of Law Day 2011 is to educate seniors, their families, and caregivers about available community resources and legal issues affecting the elderly. If you have any questions or need additional information about the event, please contact Jacqueline A. Jones, Paralegal, at 410-396-5278.

TV shows and web site assistance for Family Caregivers

Caregivers face many challenges, including financial, emotional, and physical, when they care for a friend or family member.

A Message from Joan Lunden: There are 45 million family caregivers in America who are assisting chronically ill, disabled or aged family members or friends. Family caregivers sacrifice not only their time, but often their physical and economic well-being in the process. Taking Care is a groundbreaking and courageous four-part series examining the growing concerns over caregiving.

Two free web sites are available to help families and friends coordinate care and keep people up to date:

Caring Bridge provides free websites that connect people experiencing a significant health challenge to family and friends, making each health journey easier.

Another site, Lotsa Helping Hands, provided by National Alliance for Caregiving, is a web-based caregiving coordination service that allows family, friends, neighbors, and colleagues to create a community and assist with the daily tasks that become a challenge when caring for an aging loved one or during long-term caregiving.

Do you have someone to talk to about caregiving? We are thinking of starting a support group at Stadium Place.

Growing Older and Long Distance Caregiving

I read several interesting articles recently about family caregiving and changing roles between children and their parents. Transitions are difficult, as individuals get older and are not able to do everything they previously enjoyed. Families need to spend time together and talk about their care plans, how they can help each other and not be a burden.

Here is a wonderful article by Caitlin Gibson in the Washington Post about a couple who celebrated their 80th Valentine's Day this year. http://www.washingtonpost.com/wp-dyn/content/article/2011/02/13/AR2011021303355.html?sid=ST2011021301591

Long distance caregiving is a growing challenge for many adults. Liza Berger writes in Today's Caregiver (Feb. 25, 2011) that more than three million Baby Boomers help to coordinate care for a family member or friend who lives at least an hour away. Among several good suggestions in getting organized, she suggests that people build a team of family, friends and care professionals that you can turn to for help in caring for your loved ones. http://www.caregiver.com/channels/long_distance/articles/long_distance_care_phenomenon.htm

Dementia and the overuse of medication

While Alzheimer’s disease and other dementias lead to many challenges, there is no cure-all, and drugs are frequently misused. The prevalence for people with dementia is much greater for those 85 years and older. Families with loved ones with dementia are faced with much greater caregiving responsibilities. No two people experience Alzheimer’s disease in the same way. As a result, there's no one approach to caregiving. Caregiving responsibilities after a diagnosis can range from making financial decisions, managing changes in behavior, to helping a loved one get dressed in the morning.

Community resources include the Alzheimer’s Association, hospital-based support groups, and various government resources. While there are no “cures” for Alzheimer’s disease, there are a number of medicines that might mitigate the effects of the disease. However, becoming more aware of someone’s needs, and trying to communicate with them wherever they are, is just as important. There are a number of instances where people received medicines meant for another disease or symptom. Many people become disoriented because there are given too many medicines.

Many elders in nursing homes and community-based settings are over-medicated. People being treated with dementia are given even more drugs, even though they are not very effective (many anti-psychotics only work in 1 in 5 people). Medication mostly sedates people, as opposed to treating their symptoms. A more person-centered approach would allow staff to spend time getting to know the elders. Many have some recognition of music, or art, or certain words related to their life experiences. Caregivers and nurses can work closely to draw people out, and they can become more communicative and less agitated.

Jane Verity runs an amazing program in Australia called the Spark of Life program, where staff spends 1 hour per day with people with dementia trying to connect to people in their secret gardens. View a You-tube video about this program, where staff meet individuals' social, emotional, and spiritual needs. A healthy spirit improves daily life. They use music and art and costumes to engage people with dementia, and work with doctors, nurses and families to reduce multi-meds. Many people “awoke” from year-long slumbers and started talking and participating more.

The Sandwich Generation

We are seeing more articles about the challenges of the sandwich generation - individuals who are caring for aging parents as well as their own children.

Paula Span has written a book entitled, "When the Time Comes." Excerpts from the book are summarized in an excellent article in today's Washington Post entitled "Their Parents' Keepers."

... It might be several years before he needed assisted living, but he also might have a health crisis and need a nursing home next week. Uncertainty was built into the process. We prepare for other major changes in life (marriage, parenting, retirement), but this one, caring for our aging parents, seems to take us by surprise. It shouldn't: Two-thirds of seniors will need some form of long-term care. I hoped I could be at least semi-prepared.

She mentions learning about options in elder care and having a conversation with your parents before they have a stroke or fall. What kind of care would your parents want, when the time comes? Who will you turn to for advice? In addition to family and friends, there are many geriatric care managers available in the Baltimore area.

Please comment with your challenges, rewards, and any books you might recommend regarding aging or caring for older adults.

Resources:

• ElderCare Link


• National Association of Professional Geriatric Care Managers, Resource Links

Caregiver Stress

Image by sheilaz413 via Flickr

A June 6, 2009 New York Times article by John Leland highlighted the economic stress being felt by family caregivers.

The economic crisis has spread its pain widely, but it has placed special stresses on the estimated 44 million Americans who provide care for an elderly or disabled relative or spouse, many of whom have already made themselves financially vulnerable trying to balance work and family. Many like Ms. Denk, who stepped away from the work force, are now facing ever-bleaker prospects.

Teresa Denk is 59 years old and lives with her father, a former mechanic who is 92 and requires constant care. Ms. Denk has not held a full-time job since 2000, when her mother developed cancer and required her daughter’s full-time care. Asked how she meets her monthly expenses, she said, “I do a lot of praying.”

In a recent survey of 1,005 caregivers, one in six said they had lost a job during the downturn, and 21 percent said they had to share housing with family members to save money. The survey was conducted by the National Alliance for Caregiving and Evercare, a division of the UnitedHealth Group, which provides long-term health care.

In many cases these caregivers, who rely on help from the government and nonprofit organizations to make ends meet, are finding that such services are being cut in the downturn and have had to assume even more care-related expenses.

“All the calls we’re getting are, ‘Is there money to assist me, either pay me to be a caregiver or assist me in other ways, like provide pro bono services,’ ” said Suzanne Mintz, president of the National Family Caregivers Association. [NFCA has a good resource for caregivers on their web site, Messages to Live By.]

Caregivers spend an average of $5,500 a year as part of their responsibilities, not counting lost wages, according to a 2007 survey by the National Alliance for Caregiving.

Caregivers are encouraged to take steps to keep themselves healthy, talk about their challenges, and seek ways to reduce stress. Many organizations are starting support groups for caregivers, including the Alzheimer's Association and Family and Children's Services.

Caregivers can obtain information and advice from the following web sites:

• The National Family Caregivers Association
• Family Caregiving 101
• Caring.Com.

Supporting our Parents in the Community

Image via Wikipedia

Older adults want to live in the community, as close to friends and families, as long as possible.
Many companies and organizations are working together to support elders in maintaining their independence and active lifestyles in the community of their choice, often their homes of many years. As some elders become older and frailer, they need more support from friends and family to keep independent. Typical challenges include transportation, home repairs, companionship, and eventually, care with activities of daily living (eating, dressing, bathing, walking, etc.). Action In Maturity is a not-for-profit transportation provider in North Baltimore.

Local government agencies have a wealth of information for older adults and their families:

• Baltimore City – Commission on Aging and Retirement Education
• Department of Aging, Baltimore County
• Department of Aging, State of Maryland

In many cases, family members want to keep their loved one safe, which may mean a move out of their home. Here's an interesting blog shared by Sarah Mashburn at AAHSA.

Aging at Home… Is It Overrated? I know my 85-year-old Grandma would answer with a resounding “no!”, but there is an emerging consensus among experts that aging at home may not be the best option for every older adult.

I recently read a blog post by Corinne Reider, the executive director and treasurer at The John A. Hartford Foundation. The foundation’s whole mission is to improve health care for older Americans, and Corinne believes sometimes that means residential care options.
In her post, Corinne describes her experience caring for her parents. The couple has 17 chronic diseases between them, including blindness and Alzheimer’s disease. They refused to consider moving into a retirement community or assisted living. While they moved a few blocks from Corinne’s brother, the siblings struggle to deal with their mother’s falls and their father’s refusal to get out of bed.

Are you having conversations with your family members regarding their personal challenges and their wishes to remain at home?