Celebrating Death, Hospice Visits, and Alzheimer's

This post is a round-up of a few items of interest that address caregiving, death, and hospice from a personal perspective.

• TIME Magazine had an essay from Nancy Gibbs about celebrating the day of her father's death. The metaphor her husband used to explain his death to their daughter is wonderful.

  How is it that the one event we know with absolute certainty will occur is still one we improvise? Do we lower our voices, dress in black, save a lock of hair as the Victorians did and wove into jewelry? Do you let young children see a corpse--the very word suddenly cold and empty because his flesh and blood no longer matter, his meaning filling the space once his presence is gone? "Is that Grandpa?" our 4-year-old wondered. "No, honey," my husband told her. "He's not here anymore. That's just his body." She worked at this, how the arms that held her and the lap she sat in were no longer him. "You know how when we go to Florida, we leave our winter coats at home because we won't need them there? Well, he just left this behind because he doesn't need it anymore." And this appeared to make perfect sense to her, and she went to play, full of love and certainty, and we all took a walk in the watery light of late afternoon.

• A medical student at the University of Glasgow blogs about her visit to a hospice as part of her medical training.

  I spent Wednesday morning at a hospice on the south side of the Clyde.
  
  It may not be how most people would react, but afterwards, standing outside, I turned to my VS tutor and said, “This is going to sound weird, but it seemed like a really happy place.”

• The News-Times (Connecticut) carried a story about the strong love that remains in a 68-year marriage of a couple where the husband has Alzheimer's disease.

Use of Antibiotics at the End-of-Life in Dementia Patients

The Chetek Alert (Wisconsin) published a letter about the difficulty navigating decisions to medicate near the end-of-life. HFA’s medical consultant William M. Lamers, Jr., M.D. recently weighed in on a study about antibiotic use in dementia patients. It is one thing for medical professionals to debate the ethics in journal articles, it is another to read a very personal account of the decision-making process a family must go through in regard to giving medications. The letter from John M. Hardin, involving the care of his wife who had dementia, is such an account. We are sharing it here in the interest of opening up the dialogue about the use of medications at the end-of-life.

Although patients with terminal illnesses (or their families) are more routinely asked if they have a DNR (Do Not Resuscitate) order, questions involving other types of medications are not usually part of the process. Hardin argues:

I would like to propose a new approach to nursing home admittances, especially when there are no living wills or power of attorney for health care. In addition to asking if the loved one is DNR, they should also be asked if they are DNM (do not medicate with new drugs) or PCO (Palliative Care Only). Then, and only then, will we return to the normal course of things that existed before 1943. Then and only then will we finally address the issues surrounding dementia with a more realistic, kinder approach.

UPDATE 4/28/08: A director of a nursing home responded to the letter with the following:

I read with interest the article on end-of-life decisions by John Hardin and I am in total agreement that these decisions are very difficult for all involved, but are necessary.

Knapp Haven's admission procedures do include reviewing with the resident or the responsible party measures that they want put in place so everyone respects their decisions and quality of life wishes. This is not a new approach, as it has been our policy for more than 17 years. The options presented include not only do-not-resuscitate measures, but also palliative care measures only, including the choice of medication therapy.

Mary Huset
Director of Nursing
Knapp Haven Nursing Home

Local Pennsylvania Paper Writes Caregiving Series

This three-part series from the Bucks County Courier Times focuses on caring for someone with Alzheimer's disease and dementia, by sharing one family's experiences. In the first article, writer Jo Ciavaglia talks about how Marjorie Jackson first noticed her mother was developing dementia, and the changes it brought while still undiagnosed. Next, she describes the mounting tasks Jackson begins handling for her mother as her symptoms worsen. It also discusses care options in Pennsylvania. The final article, deals with Jackson's placing her mother into a nursing home and the emotional difficulties of the transition.

Bloggers Discuss Caregiving Challenges

There are a couple of recent personal blog posts we wanted to share this week. First, this post discusses a difficult issue faced by aging parents caring for an adult disabled son. The blogger writes of his brother, who has Muscular Dystrophy and has been in a wheelchair for many years. A recent fall has made the poster question how long his parents can continue to provide care and how hard it will be to have that conversation.

Scott is a full grown man, and he doesn’t have the strength to help when he needs to be transfered from his wheelchair to the bed, or the tub, or his easy chair my dad set up to help his legs rest. And my dad turns 65 this year.

Dad has always been a big bear of a man, but he wont be able to lift Scott forever. . . Even though he needs professional semi-skilled care . . .we might could come up with some arrangement where my brother could be cared for in our homes.

But my parents are stubborn people, and it may sound funny coming from a 43 year old, but I don’t want to disobey them. I think that deep down, all of us, parents and children, know that a day is coming when the two able-bodied sons are going to have to sit down with the parents and say, “No disrespect, but you’re going to have to let it go and let us take over”. But for now, we have instead, this uneasy silence where we sons know what we have to say, but we don’t say it.

I think it’s going to take Scott telling them to let the brothers take over. Ironically, they’ll listen to him.

Thanks to the GenBetween blog for sharing. The second post, part of Virginia Cornue's series of posts on sandwich caregiving, discusses the guilt associated with making decisions about where and how your parents will receive care, and the challenges faced by those caring for young children along with aging parents.

Of all her 11 siblings, my mother was the only one who was in institutional care at the end of her life. This is something I still have not entirely reconciled. This in one of those it's not the right thing to do--not the right way to treat your elders values I hold. But it was the only practical thing to do. . .

. . .If I had been truely a Sandwich Generation participant...if I had had to care for her long distance, AND take care of an infant, go to grad school--commuting an hour or more each way, and teach parttime, do my share of the domestic chores, maintain some sort of marital and social life, I think, NO I know, I would have had not only a nervous breakdown but a physical one as well. . .

. . .More than a decade later, I still miss her daily. Her last days at The Oaks were as good as they could be. She, my model joyolgist, told me scatological nursing home jokes to lighten my heart. But I--I still don't feel right about how her last days ended. My Mom, however, would say differently to me. As is on her gravestone, she would say to me, "Do your best, honey."

Did I? Yes--given the circumstances. I guess that's all we can do in the long run.

Huge Variations in Cost of End-of-Life Care Across the United States

The Dartmouth Institute for Health Policy & Clinical Practice published its annual Atlas of Health Care. The entire report and executive summary is available for download from their website. The 2008 edition examines how care for Medicare beneficiaries with serious chronic illnesses varies across U.S. states, regions, and hospitals, in the patient's last two years of life. It includes data through 2005 as well as all sectors of care covered by Medicare: inpatient hospital care, outpatient services, nursing, home health care and hospice services.

The Dartmouth study found wide variations in the the amount and cost of care that Medicare patients receive in their last two years. While the national average was $46,412, the cost of care among the top five ranked teaching hospitals (by U.S. News & World Report) ranged from a high of $93,842 at U.C.L.A.'s Medical Center to $53,432 at the Mayo Clinic's St. Mary's Hospital in Rochester. The executive summary explains that these variations in spending are mostly due to the differences in "supply-sensitive care." Put simply, in areas where there are more hospital beds and more physicians available per capita, there will be higher admission rates and more physician visits. Nearly 55% of total spending takes place in acute care hospital settings. The authors report that over the past decade, more and more research shows that higher spending and higher use care does not equate to better care.

The study also addressed the belief that expanding access to non-acute care sectors (skilled nursing or rehabilitation facilities, home health services, or hospices) would save money. They found this not to be the case except for a small decrease in overall for those using hospice care. (A study by Duke University in November 2007 found Medicare savings for hospice vs. non-hospice users, while also giving patients a greater quality of life.) The executive summary states that currently, the United States has invested in certain types of care with the "assumption that more intensive management of the chronically ill results in better health outcomes and greater patient satisfaction. That assumption is being challenged by emerging clinical strategies designed to improve care: the hospice and palliative care movements, the growing chronic disease management industry, and population-based chronic care models that emphasize continuous and coordinated management of patients over time and among sectors of care."

Other articles covering the report:
The New York Times
The Wall Street Journal (requires subscription)
WSJ's Health Blog
AP state-by-state breakdown
The Salt Lake Tribune (examines differences between hospitals within Utah)

Knowing When Your Caregiving Is Too Much

In this post from MSCaregiver.com, a husband ponders whether his caregiving is supportive of his wife's MS, or restrictive. He debates whether his goal should be to help his wife be independent, in the same way he helps his daughters to develop their independence. In the end, he gives this sage advice:

As a caregiver, if you wonder when or whether your caregiving might be “too” caregiving, there’s a simple way to find out. Ask the person for whom you care if you’re doing too much.

British Study Urges Caution in Antipsychotic Drug Use for Dementia Patients

A study appearing in PLoS Medicine from British researchers at King's College Hospital in London, shows little or no benefit to the use of antipsychotic drugs in patients with dementia. The study examined 165 patients already on the medications and divided them in to two groups, one which continued treatment and another that received a placebo. Most patients who received the placebo had "no overall detrimental effect on functional and cognitive status."

Last December, the Wall Street Journal published two articles about antipsychotic drug use in dementia patients. One article looked at the abuse of the drugs for patients residing in nursing homes. The second article examined efforts by those facilities to wean patients off the drugs and offer other alternatives to control their symptoms.

Children Assist in Care of Alzheimer's Patients, According to New Study

The Alzheimer's Foundation of America (AFA) released a study last week showing that among so-called "sandwich caregivers" (those who are caring for an elderly relative while also parenting children under 21,) most had children who assisted them in providing care, including attending doctors’ appointments, feeding, and dressing their loved ones. In this third annual study conducted by AFA, 559 caregivers were interviewed in December 2007. From the press release:

Among children, ages 8-21, who are involved in caregiving, many are reported as taking on significant tasks:

• About one-third of young adults (ages 18-21) assist with doctors’ appointments;


• 42% of young adults assist with transporting loved ones with Alzheimer’s disease;


• About one-quarter of young adults and teens (ages 13-17) assist with activities of daily living, such as feeding and dressing;


• Nearly 90% of pre-teens (ages 8-12) visit and entertain a loved one with Alzheimer’s disease (please use caution when interpreting results due to small base size)


• Approximately 85% of teens pay visits to the person with the disease.

“Taking care of someone with Alzheimer’s disease can be an enormous drain on the caregiver and on family resources. For sandwich caregivers the problem is even more acute. It is clear that caregiving is a multigenerational concern. Young adults and even teens and pre-teens are being impacted in life changing ways by their caregiving responsibilities,” said Eric J. Hall, AFA’s president and chief executive officer.

Improvement in Care of Children with Cancer

A retrospective study of 119 patients who died from cancer between 1997 and 2004 was compared to 102 cancer patients who died between 1990 and 1997. The goal of the study was to determine whether increased palliative care could affect patients’ quality of life and care. Appearing in the Journal of Clinical Oncology, the study concluded that these children ". . . are currently receiving care that is more consistent with optimal palliative care and according to parents, are experiencing less suffering. With ongoing growth of the field of hospice and palliative medicine, further advancements are likely."

In a press release, lead author Joanne Wolfe, MD, MPH, director of Pediatric Palliative Care at Dana-Farber and Children's Hospital, discussed the findings.

Wolfe and her colleagues identified notable changes in the patterns of care. Medical record reviews indicated a 40.7 percent increase in documented discussions about home or hospice care in the follow-up study (76 percent of medical records included a note that palliative care options were discussed with the family, up from 54 percent). There also was a 16.4 percent increase in do-not-resuscitate orders (78 percent, up from 67 percent). The proportion of children who died at home remained similar between the two studies, but, in the second study, there was a 42.1 percent decrease in the proportion of the children who died in the intensive care unit (22 percent, down from 38 percent).

Although the follow-up study indicated that children were proportionately as likely to experience fatigue, pain, shortness of breath, or anxiety, they suffered less from the symptoms, with the exception of fatigue.

Wolfe said that one of the most meaningful findings to her was the shift in where children are dying. "Fewer children are dying in the intensive care unit, and that is likely because other options are open to families," explained Wolfe. "This might be because there are more opportunities to have conversations around this intensely sad outcome, but at least it is making a bit of a difference in the context of losing a child to an illness. Dying in the ICU might be the right location for some children and families, but at least they are aware that they have options."

Caregiver's Viewpoint: Validating Dementia Patients Comes Naturally

Author and caregiver Carol Bradley Bursack writes about how she dealt with her father's delusional state from dementia. Before it became a known as 'validation theory,' Bursack sought to allay her father's anxiety by helping re-create the reality he was experiencing.

Dad was adamant. He was waiting for his medical degree to come from the University of Minnesota and wondered why it was taking so long. I did what I usually did, and waited a few days to see if this episode of delusionary thinking would pass. It did not. So, I went to my computer and designed a medical degree with my dad’s name on it, scribbled some “signatures” on the bottom, put it in a mailing envelope and brought it to him, in the nursing home, the following day. He was delighted.

The Strain of Caregiving on Marriages

Last Sunday's Washington Post Magazine featured a look at the stress and strain long-term caregiving causes in marriages. The article follow one couple's caregiving journey, when the wife is diagnosed with Huntington's disease. On Monday, the Post hosted a live discussion with the article's author and the husband featured in the magazine.

Difficulty in Choosing Drugs to Treat Dementia

A group from the American College of Physicians, led by Dr. Amir Qaseem, conducted a review of 96 different studies covering five drugs used to treat dementia. According to the article in Reuters:

"The drugs can sometimes delay progression of the symptoms of dementia, which can take many different forms.

None works very well for people in general, although individual patients may see benefits, Qaseem said.

'There is so much variation between individual patients,' he said. And if doctors keep trying one drug after another, weeks and months can pass. In the end, he said, 'there might not be any effect at all.'

Writing in the Annals of Internal Medicine, Qaseem and colleagues said they looked for evidence that the drugs helped cognition, global function, behavior, mood and quality of life.

Rather than trying to find the most effective drug, doctors should focus on tolerability, adverse effects, ease of use and cost, they recommended."

The drugs reviewed are the only ones currently FDA-approved drugs for treatment of dementia, donepezil (Aricept), galantamine (Razadyne, Reminyl, Nivalin), rivastigmine (Exelon), tacrine, and memantine (Mamenda). The review has led to new guidelines issued by a joint panel of the American Academy of Family Physicians and the American College of Physicians:

Dementia Guideline Panel Recommendations

Recommendation 1: Clinicians should base the decision to initiate a trial of therapy with a cholinesterase inhibitor or memantine on individualized assessment. (Grade: weak recommendation, moderate-quality evidence.)

Recommendation 2: Clinicians should base the choice of pharmacological agents on tolerability, adverse effect profile, ease of use and cost of medication. The evidence is insufficient to compare the effectiveness of different pharmacological agents for the treatment of dementia. (Grade: weak recommendation, low-quality evidence.)

Recommendation 3: There is an urgent need for further research on the clinical effectiveness of pharmacological management of dementias.

Relief Accompanies Alzheimer's Diagnosis

A research study from Washington University in St. Louis suggests that informing patients of their Alzheimer's or dementia diagnosis early improves the emotional well-being of both the patients and their caregiver. The study examined 90 individuals and their caregivers at the Alzheimer's Disease Research Center at the university's School of Medicine, and confirmed that ". . . most patients, regardless of their degree of impairment, tend to experience a sense of relief after getting their diagnosis."

"'We undertook this study because we wanted there to be some data out there that addressed this question and that we could show to physicians and say, "Most of the people don't get depressed, upset and suicidal. So, this fear that you have about telling them and disturbing them is probably not legitimate for most people,"' says Brian Carpenter, Ph.D., associate professor of psychology in Arts & Sciences at Washington University."

Factors to Consider in the Use of Antibiotics in Dementia Patients

D'Agata and Mitchell's study in the Archives of Internal Medicine reporting on the use of antibiotics to treat infections in persons with advanced Alzheimer's disease (A.D.) brings to mind the complexity underlying the dilemmas surrounding care of persons who can no longer make therapeutic decisions for themselves. Many patients reside in an extended care facility. Most are elderly, female and lacking in definitive advance directives regarding management of infections they may develop in their final days.

Mitchell (Hebrew Senior Life's Institute for Aging Research), informs us that patients with advanced dementia ''frequently receive antibiotic medications -- especially in the two weeks prior to their death." A recent Pallimed blog (February 27, 2008) opines that this "multi-center prospective cohort is probably the best study to demonstrate the limited efficacy of antibiotics in patients with advanced dementia."

The Archives journal also includes an editorial response to the D’Agata and Mitchell study entitled, “Antibiotic Therapy in the Demented Elderly Population: Redefining the Ethical Dilemma.” This paper, which has generated intense commentary, mentions two reasons to question the administration of antibiotics to persons in the final stages of dementia:

• the lack of lasting improvement


• the possibility of predisposing to the development strains of bacteria that are resistant to commonly available antibiotics.

The commentary also points on how the decision to treat should be made, stating:

“. . .the ethical question of treatment of bacterial infection must encompass not just the deliberation over whether to withhold or withdraw treatment, but the decision to initiate it as well. All such decisions must ultimately be made individually, based on the medical situation and the expressed wishes of the patient and family, as well as on the physician's judgment of the benefits and risks entailed in treating vs not treating.”

Addressing this need for deliberation also raises the question of whether communication between the physician and the family is adequate. While it is easy to place responsibility for failures in communication at the feet of the physician, all who work with the patient share in the responsibility to communicate with the family of patients with advanced dementia. My experience in co-leading a support group for family caregivers of patients with Alzheimer's disease reminds me over and over that communication is not a one time event. Caregivers -- institutional and family -- require support as well as education. It is economical to provide this in a group that can share its knowledge with new members. Such a group is also a tremendous asset in providing support during bereavement.

I am also concerned that the discussion about administration of antibiotics to persons with end stage dementia thus far does not adequately deal with other factors that contribute to or result from the reflexive prescribing of antibiotics to persons with infections during the final phases of dementia. In the case of hospice care, there are a number of factors (imperatives) that contribute to the need for hospice/palliative care. One of them is the Therapeutic Imperative. This term suggests that there is a pressure, an imperative, to treat vs. not treat on the part of physicians, patients, family and caregivers. Physicians are reluctant to say there is "nothing more" they can offer. Patients do not want to relinquish hope. Caregivers and family members often urge doctors to "do something." Modern medicine has been held out as a right. Patients are consumers. They know that they want "something" rather than nothing. When the patient is severely demented and unable to make decisions, the family and sometimes the caregivers are reluctant to admit the inevitability of death.

Physicians are reluctant to be in a position where they have declined ordering a medication including antibiotics for elevated temperature in patients with advanced dementia. It is easier to order the medication even if it is against the physician's better judgment to do so. Further, physicians are cognizant of the legal implications of not providing a medication to treat a specific condition (like an apparent pneumonia) because of the risk of not practicing in accord with the standards of the community. The threat of being sued for malpractice is a constant presence in the lives of all physicians. In addition, our current system of physician reimbursement limits the frequency of visits. Time spent communicating with family and caregivers is covered only minimally, if at all. Due to the limited time physician are able to spend with patients’ families, it is not unusual for families to be unaware of all that is going on, including prognosis and the efficacy or lack of efficacy of various treatment alternatives.

Physicians need to speak with the family directly in order to communicate the reality of their loved one’s condition, and the efficacy of treatment options. Unfortunately, our current medical ethics, legal realities, and financial reimbursement structure work against this type of ongoing communication. The Archives commentary has created a dialogue in the area of medical ethics. There are many other areas to address regarding the difficulties in caring for persons with advanced dementia.

William M. Lamers, Jr., M.D.

Recent Study Suggests Dementia and Other Cognitive Impairments Are on the Decline

The results of a national study showing a downward trend in the rate of cognitive impairment among Americans aged 70 and older were widely reported yesterday. The term 'cognitive impairment' is used to cover those suffering from significant memory loss and different types of dementia, including Alzheimer's disease. The study from the journal Alzheimer’s and Dementia was produced by a team of two University of Michigan Medical School physicians and their colleagues. An excerpt from the University of Michigan press release:

"The prevalence of cognitive impairment in this age group went down by 3.5 percentage points between 1993 and 2002 -- from 12.2 percent to 8.7 percent, representing a difference of hundreds of thousands of people."

"And while the reasons for this decline aren't yet fully known, the authors say today's older people are much likelier to have had more formal education, higher economic status, and better care for risk factors such as high blood pressure, high cholesterol and smoking that can jeopardize their brains."

Read coverage of the study reported by the Seattle Times, Boston Globe, and Science Daily. Carol Bradley Bursack, eldercare columnist for OurAlzheimers.com, writes about how seemingly conflicting studies can confuse the general population. (In October 2007, The American Academy of Neurology released a study indicating that among people who develop dementia, those who are more educated lose their memory at faster rate.) Bursack writes:

"One thing these studies all seem to agree on is that people shouldn't quit learning. Exercising one's mind and caring for one's physical health seem to be key to remaining as healthy as possible, overall. Keeping an active mind and body are not guarantees that dementia will not strike. But keeping our minds active and our bodies as healthy as our genes will allow are somethings we can do that certainly will not cause harm, and doing these things can give us hope that we may remain dementia free, or at least put off the effects for a longer period of time. There will always be exceptions, but why not try?"

"The study is also realistic in noting that the sheer numbers of elders who are (and will be) living longer ensures that we will be fighting Alzheimer's and other dementia for years to come. Nothing is 'licked' yet. However, any good news on this front is welcome to we who are on the leading edge of baby boomers, and to our children."

Supporting Children Coping with Cancer

An article from the Baltimore Sun addresses support groups for children who have a family member with cancer. The program, started by the Children's Treehouse Foundation, is called CLIMB (Children's Lives Include Moments of Bravery.) The group notes that there are 1,400 cancer hospitals in the U.S., but only 50 to 60 such programs with emotional support groups for the children of those patients.

HFA's 2008 Living with Grief live-via-satellite teleconference will focus on the experience of grieving children and adolescents and the ways that hospice professionals, teachers and school administrators, grief counselors, funeral directors, and parents can best support these populations as they cope with loss and grief. Learn more about the program, to be held April 16, 2008 and find out where you can view the program near you.

New Guidelines Issued For End-of-Life Care

The American College of Physicians (ACP) has issued new guidelines to address palliative care for seriously ill patients. The guidelines address three common symptoms experienced by patients who are approaching the end of life: pain, shortness of breath (dyspnea), and depression. An article from MedPage Today also addressed how doctors determine when end-of-life care should begin. "Asking clinicians 'Would it be a surprise if this patient were to die within six months?' is being used widely but also has had no rigorous testing," according to Karl A Lorenz, M.D. and colleagues of the Veterans Affairs Greater Los Angeles Healthcare System. Their review of existing literature and reports resulted in the ACP's new guidelines. The article stated:

"For those with serious illness at the end of life, the guidelines recommended that clinicians should:

• Regularly assess patients for pain, dyspnea, and depression.


• Use therapies proven effective to manage pain, which for cancer patients includes nonsteroidal anti-inflammatory drugs, opioids, and bisphosphonates.


• Use therapies proven effective against dyspnea, which include opioids in patients with unrelieved dyspnea and oxygen for short-term relief of hypoxemia.


• Treat depression with proven therapies, which for cancer patients includes tricyclic antidepressants, selective serotonin reuptake inhibitors, and psychosocial intervention.


• Ensure advance care planning, including completion of advance directives, for all patients with serious illness."

The Impact of Depression on Treating Older Adults

We read two more articles of note from the January 2008 issue of the CDC's Preventing Chronic Disease journal, which address the impact of depression on the health of seniors. The first gives an overall view of the public health issues.

"Although public health is often conceptualized only as the prevention of physical illness, recent data suggest that mental illnesses are increasingly relevant to the mission of disease prevention and health promotion. Projections are that by 2020, depression will be second only to heart disease in its contribution to the global burden of disease as measured by disability-adjusted life years. Also, as the population ages, successive cohorts of older adults will account for increasingly larger segments of the U.S. population. We present the diagnostic criteria for, prevalence of, and risk factors for depressive disorders among older adults; the challenges of recognizing and treating depression in this population; the cost-effectiveness of relevant public health interventions; and the public health implications of these disorders."

The second looks more specifically at the challenges of treating depression in seniors.

"Depression is increasingly recognized as a significant public health problem among older adults. Because the condition is highly treatable and currently undertreated among community-based older adults, late-life depression is an appropriate focus for disease prevention programs. We report findings from a recent project to review the scientific literature for published reports about treatment for depression among community-dwelling older adults and to recommend the interventions with proven effectiveness. We also summarize the research findings related to each recommended intervention and describe the elements of each. To show the difficulties involved in translating research into practice, we describe real-world experiences in implementing these evidence-based interventions in various community settings. Because depression among older people is viewed more and more as a public health problem, we suggest that partnerships of providers, patients, and policy makers be forged to overcome challenges related to funding, training, and implementing treatments for this condition."

Journal of Clinical Oncology: From 'Just Say Die' to Discussing Emotions

This article from the Journal of Clinical Oncology caught our eyes on the Pallimed blog earlier this month. Reported this week in the New York Times, the journal has published a study examining the role empathy plays in the treatment of cancer.

Study on Life Span for People Diagnosed with Dementia

The British Medical Journal published a study yesterday showing people with dementia live an average of four and a half years after being diagnosed. The study was conducted in England and Wales and included 438 people over a 14-year period. The researchers looked at whether several factors influenced mortality. Read a synopsis from Science Daily here.

Changes That Comes with Alzheimer's Can Strain a Marriage

This article from Cincinnati's The Enquirer addresses the difficult changes that the early stages of Alzheimer's disease can bring to a marriage. As a spouse experience personality changes from the disease, their partner is faces with losing the characteristics they love. The author suggests making a list to help focus on the aspect of the relationship that are still positive. You can also engage in activities that allow you to enjoy the relationship, according to the article. An excerpt:

* singing and music
* reviewing photo albums
* talking about the past
* taking walks or rides
* visiting with animals or children
* engaging in simple projects such as gardening or painting
* assisting with personal care such as shaving, manicures or hair-setting
* exercising and dancing

Children Can Fear the Future When They Have Two Parents with Dementia

This article from the New York Times examines the concerns of children whose parents are suffering from dementia. When a caregiver has two parents suffering from the disease, there is the added stress of worrying whether you will be afflicted in future years.

The Personality Changes Brought About by Alzheimer's Can Be Disturbing to Family Members

Coping with the mood and personality changes that can accompany Alzheimer's can be particularly challenging for family caregivers. Some wonder if the disease has allowed a patient's true personality to surface. This New York Times article by Denise Grady addresses these concerns and discusses the ways to cope.

WSJ Provides More Coverage On How Nursing Homes Treat Dementia Patients, After Raising Alarm On Prescription Drug Abuse Dangers

Lucette Lagnado reports on how some nursing homes are attempting to wean patients off the drugs and lower their use overall. This article is a follow-up to her Dec. 4 article in the Wall Street Journal regarding the abuse of antipsychotic drugs among dementia patients in New York nursing homes.

Interestingly, the article states that according to the Centers for Medicare & Medicaid Services, nearly 21% of patients not suffering from psychosis in nursing homes are taking these drugs. Unfortunately, even though new guidelines have been issued to limit the use of antipsychotics, the reimbursement rules tip in the favor of prescribing medication rather than hiring extra staff that would allow the nursing home to better tailor their care to the individual. Some examples of that care include giving dementia patients tasks to do that relate to their former work, using massages and aromatherapy to help calm them, and giving them more reading materials.

Advice on Approaching the Holidays When Loved Ones Are Ill

This blog, The Assertive Cancer Patient, offers advice on dealing with holidays when a friend or family member is suffering with cancer. Jeanne Sather, a cancer patient for nine years, offers some trial questions to ask your loved one to start a dialogue about how to celebrate when illness is present.

With Alzheimer's Disease, the Losses Come Sooner

Elizabeth Uppman

Recent news reports tell the awkward last chapter of the love story between former Supreme Court justice Sandra Day O’Connor and her husband, John O’Connor. He was diagnosed with Alzheimer’s disease 17 years ago. The family recently placed him in a long-term care facility, where he has fallen in love with a woman who lives at the same facility. The O’Connors’ son, Scott, says his father acts like “a teenager in love… sitting on the porch swing holding hands.”

Alzheimer’s experts say these kinds of attachments are to be expected, and that the patient is not to blame. Kathleen Waldron, interim director of the ASU West School of Aging and Lifespan Development, says “A person who has dementia does not live in the same world the rest of us live in, and their reality may be completely different. You cannot take anything a person does with dementia personally.”

Wise words, but not easy to live by.

My grandmother has had Alzheimer’s for almost as long as John O’Connor. When I visit her at the nursing home, I wheel her down to the quiet room and sit facing her. I rub lotion into her hands, ask her how her day is. When nobody else is around, I sing. Grandma looks at me with a puzzled expression. Her eyes are curious but blank. She was once a modest person, shy and self-effacing. Now she stares straight at me, and I stare back. She doesn’t mind the kind of directness that once would have been unthinkable. She doesn’t hide anything because she has nothing left to hide.

It must be difficult for Sandra Day O’Connor to see her husband holding hands with another woman, just as it’s difficult for me to withstand the directness of my grandmother’s stare. This is not the way the person I love is supposed to behave. It’s sad – devastating, really – the things a disease can take away from us, things we thought were absolute. It makes you wonder, grimly, where the bottom line is, where is hidden that last and most precious thing that makes us ourselves, and whether that thing can be taken away, too.

Every once in a while my grandmother gives me what I’m waiting for: a smile. She smiles the way she always did, shruggingly, in a “well, here we are again” kind of way. She used to smile this way at the mistakes we kids made, the jelly on the carpet, the gum in the doll’s hair. Well, here we are again, her smile would say, and then she would hunker down and fix it.

I wish I could do the same for her – I wish I could hunker down and fix the Alzheimer’s that is erasing her story, line by line.

Elizabeth Uppman

Grief and Dementia: Twice the Loss

How do you help someone through losing a person twice? I don't know, but I’m trying to figure it out. I guess by doing what I have been doing—being here for him, letting him talk when he needs to, being silent when he needs that, and through it all, just letting him know that he doesn't always have to be strong.

Earlier this year, it was time for my boyfriend's family to decide whether or not to seek hospice care for "Granny." She was 96 years old, in frail condition, and suffering from dementia; to me, it didn't seem that hard of a decision. But she wasn't my grandmother and, while I am a part of his family as he is part of mine, this simply wasn’t my decision to make. When his family did elect for hospice services, those who weren't against the decision, my boyfriend included, acknowledged that hospice was in Granny’s best interest.

I never knew Granny; my only knowledge of the woman she was came through her grandson's words. She was clearly a very special woman, and he had already mourned her loss, as her personality and her memories—what made her the woman she had been—were gone. However, with the acknowledgment that the Granny they had known was gone, on my boyfriend's part, at least, there was a great deal of guilt, and a big part of that was due to the belief that when Granny did die, there would be no more room for grief. I never believed, not even for a second, that he was right, but instead of trying to convince him there would be grief when her body died, I tried to help him come to peace with the fact that since she was already gone, there was no reason to feel guilt, and it did not make him a bad person. I'm still not sure if I handled it right, but telling him there was no reason to feel guilt because he would grieve seemed unnecessarily cruel at that point.

Dementia is a cruel disease. It forces you to lose someone twice, first when the personality goes and then when the body dies. Seeing it as a very concerned observer was hard, experiencing the actual pain of losing someone twice must be excruciating. When Granny's body died it wasn’t much more than an empty vessel, but the body was still the last living connection to the woman she had been, and I was right, horribly right. He did grieve over the loss. He's not a man who talks much about his feelings, so the night she died, I just sat there next to him and held his hand while we watched his favorite movie. At first, I worried about him, as there was no sign of grief, and I wondered if he had been right, after all. But what initially seemed to be a lack of grief was actually a kind of numbness. He carried on as if nothing had really changed, and I guess it was his way of coping or trying to be the strong man he felt his mother and sister needed him to be, but eventually the grief came, and that was as hard to bear as his guilt had been, but at least the grief was something I could understand. But even with that understanding, I still struggle with how to help him cope with his loss.

Susan Belsinger

The Financial Costs of Caring for a Spouse

Claire Howard of the Journal Star reports on the financial implications of caregiving for patients with chronic or terminal illness. In most cases in the United States, spouses cannot be paid as caregivers, forcing many couples to make difficult decisions regarding care. Many spouses work outside the home, placing their loved one in long-term care or a nursing home. Others resort to divorcing in order to be paid for giving care to their former spouse. Howard relates personal examples of these difficult choices.

The Mental Health Effects of Caregiving

A blog post on MSCaregiver.com questions the idea that caring for those with a serious impairment, in this case multiple sclerosis, impacts caregivers' mental health more negatively than the other stressors of life. In fact, the blog asserts that caregivers mental health is not worse than the general population.

Caregivers do need to pay attention to their overall health and seek assistance when needed. View some tools for caregivers, including a caregiver self-assessment questionnaire, at HFA's Caregiver's Corner.

Caring for Family Members with Alzheimer's and Dementia Patients Creates Challenges

Jeanne M. West,a registered nurse and health care administrator, writes in a Pennsylvania newspaper of the difficulty providing care for those suffering from Alzheimer's disease and dementia. Despite the fact that West had taught caregiving skills for 20 years, with a particular emphasis on the care of seniors and those with dementia and Alzheimer's disease, she found herself challenged when she needed to provide care for her husband who was diagnosed with dementia. West is a past president and board member of the Central Coast Chapter (Santa Barbara, Calif.) of the Alzheimer’s Association.