Category Archives: Caregiving – Dementia

I picked up a copy of Preserving Your Memory magazine today at the doctor’s office.  An article on dealing with loss was worth reading.  Though it’s about dealing with losses when your loved one has dementia, I think the article applies to dealing with losses when your loved one has any sort of medical condition or when you are dealing with any sort of medical condition.

Here are some of the key points made in the article:

* We “now rely more on what we call the ‘dual process model’—where a grieving person tries to live life in the new reality while at the same time coping with a sense of loss…”

* “Grief is not about death, but about loss.”

* “If grief is the conflicting feelings caused by the end of or change in a familiar pattern of behavior, then any changes in relationships with people, places, or events can cause the feelings we call grief.”

* The ambiguity of caring for a living, breathing person while grieving the loss of that person’s former self can be overwhelming and confusing.

* Anticipatory grief. In this phase, caregivers grieve in the face of the disease and brace for what’s to come.

The article offers some “tips for healthy grieving.”

Here’s a link to the article, which starts on page 10:

www.alzinfo.org/wp-content/uploads/2011/12/PYM_Winter12.pdf 

Loss: The relationship between dementia and grief is a complicated one.
Preserving Your Memory (Magazine)
Winter 2012

Robin

Family Caregiver Alliance (caregiver.org) is a wonderful organization focused on caregivers.  They have a blog series on the “30 Days of Caregiving.”  Day 10 focuses on the value of caregiver-only support groups.  Brain Support Network coordinates a caregiver-only support group in the San Francisco Bay Area for Lewy Body Dementia, Progressive Supranuclear Palsy, Multiple System Atrophy, and Corticobasal Degeneration.  Here’s the FCA post as to why you should join!

Robin

———————-

www.caregiver.org/day-10-immense-value-family-caregiver-support-group

Day 10: The Immense Value of the Family Caregiver Support Group
By Lois Esobar, MSW, Family Consultant at Family Caregiver Alliance
November 10, 2011

The role of a family caregiver is difficult. Aside from taking care of their loved one, they must also continue to lead their lives, which includes working, caring for family, grocery shopping and a seemingly endless list of potentially stress-inducing responsibilities! Many family caregivers need time to vent in a safe place. Caregiver support groups allow caregivers to have that special time to be with other people who have similar issues.

Support groups are a place to receive and give support—so essential to the family caregiver. About eight years ago, I taught a caregiver class in Spanish here in San Francisco. Participants in the class appreciated having the class in their language, but they also wanted more, and so began our Spanish caregiver support group which I have facilitated for the past eight years. Many family caregivers have attended the group since its inception and have told me how much they look forward to the meetings. At the beginning of the meetings, caregivers check in with each other to see how they’re doing. Blanca, one of the members stated: “this support group is the place that I can go to and be understood. I learn so much from my group of friends.”

Time and again, caregivers have told me that the support they receive is so beneficial. Many of the participants have formed friendships and stay in contact with eachother in between the monthly meetings. Participants also look forward to the different types of food that members bring to the meetings- whether it’s Columbian, Cuban, El Salvadoran, or Mexican. Members are even planning a Thanksgiving gathering! Over the years many family caregivers have told me that they feel isolated. They often do not talk to anyone for days. Rosa says: “Sometimes I feel very isolated and alone, but when I come to the group, I know that there are others who care.”

Being in a caregiver support group allows the caregiver to focus on their needs, not only the needs of the care receiver. The meeting once a month is a gentle reminder that family caregivers need to put themselves first . . . even if only for a couple of hours each month! The caregivers in the group are caring for loved ones affected by stroke, Alzheimer’s disease, Parkinson’s disease, and Lewey Body Dementia and we’ve had guest presenters come to the group and talk about these diseases. Besides the guest speakers, I have learned from the caregivers about their stressors, challenges, and frustrations, and this has made me a better social worker.

People hear about the support group most often from word-of-mouth from a friend, but other social workers will also make referrals. Family caregivers need to be mindful of when it is time to look for more support. Some of the signs can be as follows: You feel exhausted and have less energy. You become overwhelmed easily and feel helpless. You also become easily frustrated, angry and irritable. Most importantly, you begin to neglect your own needs.

Some Resources to Help

1. “Support groups a lifesaver for caregivers” By Paula Falk. Herald Tribune. July 12, 2011. Available at www.heraldtribune.com/article/20110712/WIRE/110719938/2059/LIVING?p=1&tc=pg

2.  FCA: “Caregivers Online: Using Support Groups on the Internet”

3.  FCA: “How To Form A Support Group”

4.  FCA: “Family Caregiver Alliance’s 4 Online Support Groups”

Creative Commons License
The Immense Value of the Family Caregiver Support Group by Lois Escobar, MSW, Family Consultant at Family Caregiver Alliance is licensed under a Creative Commons Attribution-NoDerivs 3.0 Unported License.

This is a good article from the Herald-Tribune (heraldtribune.com) about support groups being a “lifesaver” for caregivers.  Brain Support Network coordinates a caregiver-only support group in the San Francisco Bay Area for Lewy Body Dementia, Progressive Supranuclear Palsy, Multiple System Atrophy, and Corticobasal Degeneration.  Here’s the Herald-Tribune article as to why you should join!

Robin

———————-

www.heraldtribune.com/news/20110712/support-groups-a-lifesaver-for-caregivers

Support groups a lifesaver for caregivers
by Paula Falk, correspondent
Herald-Tribune
Posted Tuesday, Jul 12, 2011 at 12:01 AM

In the sometimes crazy, often exhausting and overwhelming world of caregiving, finding a safe place to share, occasionally vent and figure out what to do next isn’t always easy.
A support group can help hold life together when everything around you seems to be unraveling.

Without support, the impact of caregiving on one’s health can be devastating. It has been estimated that more than 60 percent of caregivers predecease their loved ones. As one long-term attendee of our support group at Senior Friendship Centers observed:

“Do you notice that individuals in our group are still here? I think one of the reasons is because we come to this support group. The support we receive here, the strategies we learn, the strength we gain to move forward and make decisions, all have an impact on our health and well being.”

What to expect: There are two rules in most support groups: personal information is confidential and one person talks at a time. People are given a chance to talk about their situation, and are never pressured to share anything if they feel uncomfortable doing so. Typically, new people tell something about themselves and their caregiving situation, and members of the group ask questions about the challenges they’re facing, what they need and what they are doing to get through it.

You’re not alone: You learn that you’re not the only one having trouble coping. Other members of the group listen and offer solutions. You are encouraged to take bits and pieces from the “experts” around the room who have been through many of the same experiences you’re facing, and to use what works for you. No one judges. When somebody is telling their story for the first time, you will see others nodding to indicate they have had a similar experience.

Your feelings count: “When people say “how are you?” they genuinely want to know how you are, instead of focusing only on your loved one,” as one participant said. All too often it can be easy for the caregiver’s needs and identity to get lost in the process of caring for another.

Taking action: As trust grows, people in the group become accountable to each other and often encourage one another to move forward to find solutions. Together, they help identify options, provide support, build confidence to make decisions, and take action.

For example, one couple attending a group hadn’t had a vacation or time to themselves for over a year. Their mother was in a facility being cared for, but they couldn’t imagine going away for even a day, let alone taking a trip, because they felt they needed to be there for her all the time. The group pointed out that she was well cared for, and it was OK to give themselves permission to care for themselves. It was a tremendous relief to them.

Healthy choices: Sometimes communication can be especially tough for men and for people who internalize stress. Finding a safe place to share feelings is important. We’re finding that more and more men are reaching out and joining support groups to ease the emotional and physical toll caregiving can take on their lives.

Note: Support groups specific to the disease your loved one has been diagnosed with are especially beneficial. There are support groups for Alzheimer’s, cancer, Parkinson’s, stroke and other diseases. Information is available through local organizations serving these diseases as well as through Senior Friendship Centers Caregiver Resource Center.

Paula Falk, the director of the Caregiver Resource Center (CRC) and Adult Day Service Program at The Living Room at Senior Friendship Centers’ Sarasota campus, writes a monthly column for Health + Fitness. The Caregiver Resource Center is a community collaboration bringing together agencies and businesses offering services and products to help caregivers. For more information, call 556-3270, email [email protected], or visit www.friendshipcenters.org.

Though the two studies mentioned in this post refer to feeding tubes in those with dementia, many issues raised in this email are relevant to those without dementia as well.

Dr. Joan Teno, a community health physician and researcher at Brown University and Dr. Susan Mitchell, of the Hebrew Senior Life Institute for Aging Research, have researched feeding tube decisions over the last several years. Previously they found that “some American hospitals inserted no feeding tubes ­ zero ­ in patients with advanced dementia over an eight-year period while others [inserted feeding tubes in] one in three.” In their 2010 study, they concluded: “Among nursing home residents with advanced cognitive impairment admitted to acute care hospitals, for-profit ownership, larger hospital size, and greater ICU use was associated with increased rates of feeding tube insertion, even after adjusting for patient-level characteristics.”

Wanting to explore the discrepancy in feeding tube placements, these two researchers and a team surveyed family member, after their relatives’ deaths, on decisions they had made regarding feeding tubes. All of the deceased relatives had dementia. The researchers talked to nearly 500 people from five states — MA and MN, where there are low rates of feeding tube use, and AL, FL, and TX, where there are high rates of feeding tube use.

About 10% of the deceased relatives received a feeding tube. The New York Times reports that:

* “Of patients who received feeding tubes, 13.7 percent of family members reported that doctors had inserted the tubes without seeking permission at all.”

* “But even when medical providers raised the issue and a feeding tube was inserted, 12.6 percent of the family respondents said they had felt pressured by the physician to agree to the procedure, and more than half believed that the physician strongly had favored tube insertion.”

* “Moreover, these talks tended to be cursory: More than 40 percent of respondents said the discussion had lasted less than 15 minutes, and roughly a third said no one had mentioned the risks involved.”

* “In the end, about a third of these families said they thought the feeding tube did improve their loved ones’ quality of life, while only 23.4 percent said they regretted the use of the tube.”

Dr. Teno addresses why there’s a push for feeding tubes: “My guess is, we’ve changed hospital medicine to focus on discharge. How do we move someone quickly out of the system? You put the feeding tube in, you send people back to the nursing home.”

Dr. Paula Span, who wrote the New York Times article on the study, believes that the push for feeding tubes results from doctors not wanting to talk about death with their patients.

Here’s a link to the NYT article (with some interesting reader comments posted):
http://newoldage.blogs.nytimes.com/2011 … -in-haste/

And I’ve copied the abstract of the recent article authored by Teno, Mitchell, et al, below as well as their 2010 article on the differences in hospitals’ rates of feeding tube placement.

Robin

Decision-Making and Outcomes of Feeding Tube Insertion: A Five-State Study

Joan M. Teno MD, MS, Susan L. Mitchell MD, MPH, Sylvia K. Kuo PhD, Pedro L. Gozalo PhD, Ramona L. Rhodes MD, MPH, Julie C. Lima PhD, MPH, Vincent Mor PhD

Journal of the American Geriatrics Society, 59. Article first published online: 3 MAY 2011

OBJECTIVES: To examine family member’s perceptions of decision-making and outcomes of feeding tubes.

DESIGN: Mortality follow-back survey. Sample weights were used to account for oversampling and survey design. A multivariate model examined the association between feeding tube use and overall quality of care rating regarding the last week of life.

SETTING: Nursing homes, hospitals, and assisted living facilities.

PARTICIPANTS: Respondents whose relative had died from dementia in five states with varying feeding tube use.

MEASUREMENTS: Respondents were asked about discussions, decision-making, and outcomes related to their loved ones’ feeding problems.

RESULTS: Of 486 family members surveyed, representing 9,652 relatives dying from dementia, 10.8% reported that the decedent had a feeding tube, 17.6% made a decision not to use a feeding tube, and 71.6% reported that there was no decision about feeding tubes. Of respondents for decedents with a feeding tube, 13.7% stated that there was no discussion about feeding tube insertion, and 41.6% reported a discussion that was shorter than 15 minutes. The risks associated with feeding tube insertion were not discussed in one-third of the cases, 51.8% felt that the healthcare provider was strongly in favor of feeding tube insertion, and 12.6% felt pressured by the physician to insert a feeding tube. The decedent was often physically (25.9%) or pharmacologically restrained (29.2%). Respondents whose loved ones died with a feeding tube were less likely to report excellent end-of-life care (adjusted odds ratio=0.42, 95% confidence interval=0.18–0.97) than those who were not.

CONCLUSION: Based on the perceptions of bereaved family members, important opportunities exist to improve decision-making in feeding tube insertion.

PubMed ID#: 21539524 (see pubmed.gov for this abstract only)

Hospital Characteristics Associated With Feeding Tube Placement in Nursing Home Residents With Advanced Cognitive Impairment

Joan M. Teno, MD, MS; Susan L. Mitchell, MD, MPH; Pedro L. Gozalo, PhD; David Dosa, MD, MPH; Amy Hsu, BA; Orna Intrator, PhD; Vincent Mor, PhD
Author Affiliations: Center for Gerontology and Health Care Research, Warren Alpert School of Medicine, Brown University, Providence, Rhode Island (Drs Teno, Gozalo, Dosa, Intrator, and Mor and Ms Hsu); Institute for Aging Research, Hebrew Senior Life, Harvard Medical School, Boston, Massachusetts (Dr Mitchell); and Providence Veterans Affairs Medical Center, Providence, Rhode Island (Drs Dosa and Intrator).

JAMA (Journal of the American Medical Association). 2010;303(6):544-550.

ABSTRACT
Context
Tube-feeding is of questionable benefit for nursing home residents with advanced dementia. Approximately two-thirds of US nursing home residents who are tube fed had their feeding tube inserted during an acute care hospitalization.

Objective
To identify US hospital characteristics associated with higher rates of feeding tube insertion in nursing home residents with advanced cognitive impairment.

Design, Setting, and Patients
The sample included nursing home residents aged 66 years or older with advanced cognitive impairment admitted to acute care hospitals between 2000 and 2007. Rate of feeding tube placement was based on a 20% sample of all Medicare Claims files and was assessed in hospitals with at least 30 such admissions during the 8-year period. A multivariable model with the unit of the analysis being the hospital admission identified hospital-level factors independently associated with feeding tube insertion rates, including bed size, ownership, urban location, and medical school affiliation. Measures of each hospital’s care practices for all patients with serious chronic illnesses were evaluated, including intensive care unit (ICU) use in the last 6 months of life, the use of hospice services, and the ratio of specialist to primary care physicians. Patient-level characteristics were also considered.

Main Outcome Measure
Endoscopic or surgical insertion of a gastrostomy tube during a hospitalization.

Results
In 2797 acute care hospitals with 280 869 admissions among 163 022 nursing home residents with advanced cognitive impairment, the rate of feeding tube insertion varied from 0 to 38.9 per 100 hospitalizations (mean [SD], 6.5 [5.3]; median [interquartile range], 5.3 [2.6-9.3]). The mean rate of feeding tube insertions per 100 admissions was 7.9 in 2000, decreasing to 6.2 in 2007. Higher insertion rates were associated with the following hospital features: for-profit ownership vs government owned (8.5 vs 5.5 insertions per 100 hospitalizations; adjusted odds ratio [AOR], 1.33; 95% confidence interval [CI], 1.21-1.46), larger size (>310 beds vs <101 beds: 8.0 vs 4.3 insertions per 100 hospitalizations; AOR, 1.48; 95% CI, 1.35-1.63), and greater ICU use in the last 6 months of life (highest vs lowest decile: 10.1 vs 2.9 insertions per 100 hospitalizations; AOR, 2.60; 95% CI, 2.20-3.06). These differences persisted after controlling for patient characteristics. Specialist to primary care ratio and hospice use were weakly or not associated with feeding tube placement.

Conclusion
Among nursing home residents with advanced cognitive impairment admitted to acute care hospitals, for-profit ownership, larger hospital size, and greater ICU use was associated with increased rates of feeding tube insertion, even after adjusting for patient-level characteristics.

PubMed ID#: 20145231 (see pubmed.gov for this abstract as well as a link to the full article at no charge)