The death of a loved one is difficult for anyone, but it is a special challenge when someone in the family has dementia. It’s hard for family members to know how and when to tell the person with dementia about the death. And what should they do when the person doesn’t remember?
Coping with Losses
People with dementia have had many “little deaths” in the course of their disease—things like losing their independence and the ability to drive, read, cook or enjoy hobbies. Memories and relationships are huge losses. These losses are stressful for people with dementia and their families.
How people with dementia cope with loss is affected by many things, including: the stage of their dementia, their relationship to the person who has died, how often they were in contact with that person, and their personal way of grieving.
Grief Process
For people without dementia, recovery from a death usually involves accepting the reality of the loss, learning to live with it, and finding a new “normal.” For most, the pain of the loss can transform into beloved memories. For someone with dementia this process is often impossible.
People with dementia who are grieving are often agitated and restless. They may sense that something is not right, something is missing. They may confuse one loss with another. A recent death may stimulate the memory of loss from childhood. It can be stressful for family members to decide when and how to tell them about the death of a loved one—and even how often to tell them. Repeatedly telling a person with dementia about a death can make family members’ grief more painful.
Telling About a Death
Here are some hints for telling a person with dementia about a death:
- Tell the news as soon as possible. They will sense that something is wrong and need information to understand, even if just for that period of time.
- If you are too emotional to talk to them, find someone else—maybe a friend or healthcare professional.
- Choose a time to talk when the person with dementia is well rested.
- Use short, simple sentences. Don’t give too many details; this may overwhelm them.
- Answer questions as honestly as possible.
- Use clear words like “died” instead of “passed away” or “at peace now.”
- Try not to protect the person from the truth by suggesting that the person who has died is away and will return later. This can cause worry and agitation later when the person does not return.
- You can support them with physical touch, such as a hug or holding hands.
- Consider involving the person with dementia in funeral planning, assigning a simple task. This will help the death be more real for them. They may recognize the rituals around death and act appropriately.
- Plan for someone to be with the person during services who can also take them out if they become agitated.
Accepting Death
Here are some ideas of ways to help the person with dementia accept the death:
- Speak in the past tense about the person who has died. For example, “I loved Mom’s holiday cookies.”
- Talk with them about the person who has died and express your sadness. “I sure miss Dad. He always made birthdays so fun, didn’t he, Mom? Remember when he….” Bring out pictures and tell stories if this helps their grief process.
- Accept how often they want to talk about the person who has died—perhaps frequently, not much, or maybe not at all.
If over time they continue to ask for the person who has died, there are some things you can do. In the beginning, gently remind them that the person has died. If reminding them becomes upsetting, you can try these ideas:
- Respond to the emotion under their words, feelings like sadness, longing, fear, distress, suspicion, anger, concern or confusion. You can respond to what you see:
- “You sound really frightened (or lost, or angry, etc.) to me. Let me help you with that.”
- “You must really be missing her. Tell me what you miss most.” Share your own feelings: “I miss her, too.”
- Check their mood at the moment. If the person is unaware and not distressed, you don’t need bring up the reality of what has happened.
- Look for patterns in the times they ask for the person who has died. Look for an unmet need. For example, if the person who has died usually brought them coffee in the morning, the change in this routine could be distressing and remind them that their loved one is not there.
- Use distraction only when other ways of dealing with their grief are not working.
Each family has to find what works for them, and then try to be as consistent as possible. You may want to write out a simple plan for all family members and visitors to follow.
You can be most supportive to the person with dementia if you also take care of your own needs and get support. We encourage family members to find support to help them cope with the painful, frustrating, lonely and sad feelings that they may feel. Supporting the person with dementia takes patience, but family members should remember to be patient with themselves as well during this stressful experience.
References: http://www.nia.nih.gov/alzheimers; http://www.alz.co.uk; http://www.pathwayshealth.org
Food or Medicine
Culture and ethnicity shape patient’s and families’ view about artificial hydration (AH) at the end of life, with ethnic minorities seeing it as food more often than non-Hispanic European Americans, according to 2012 research.
“Identifying some of the beliefs and barriers regarding the decision-making process in this challenging area may provide preliminary evidence for culturally appropriate end-of-life communication strategies and care that incorporates individual assessments of the pros and cons of hydrating in each particular context,” suggest Isabel Torres-Vigil of the University of Houston, Texas, and co-investigators.
They conducted an interview-based study of 122 terminally ill cancer patients, asking, “Are these fluids more like food or more like medicine?” The study authors sorted answers as food, medicine, both or other.
Results showed 38% saw AH like food, 34% as medicine, 14% as both, and 14% as other (including vitamins and saline). Ethnic minorities perceived the AH as food 66% of the time vs. 41% for non-Hispanic European Americans.
The findings were significant enough that the research team suggest when patients with advanced cancer begin to decrease their oral intake of fluids, healthcare professionals should ask what perceptions they or their caregivers have about the role of AH to promote the most patient-oriented approach to end-of-life care.
Source: British Medical Journal: Supportive and Palliative Care, July 2012.
This article was originally published in Pathways Physician & Health Professional Bulletin - Issue 26. To download this issue in PDF format, or past issues, visit our newsletter archives online at www.pathwayshealth.org/publications.
"Medical Food"
Giving 125 ml of “medical food” once a day to people with mild Alzheimer’s disease appears to improve memory. These were the findings of a trial done in the Netherlands and presented at the 2012 Alzheimer’s Association International Conference.
This was the second large study showing that diet with specialized “medical food” can improve memory. A medical food is specially formulated liquid diet supplement for people with a particular disease or condition and is given under the supervision of a doctor by prescription.
The improvements continued for 48 weeks. At the end of 24 weeks those who had been assigned to take a placebo drink were switched to the active treatment. They also experienced significant memory improvement.
The medical food used in this study, Souvenaid, was developed by researchers at the Massachusetts Institute of Technology in Boston. Lead researcher, Dr. Philip Scheltens, said that the food “is medical nutrition, and we think it may offer a new approach—a dietary management approach, if you like — for people with very early Alzheimer’s disease.” He added that it is very safe and well tolerated. No serious adverse events were reported in the participants who complete the trial.
This article was originally published in Pathways & Partners Newsletter - Issue 27. To download this issue in PDF format, or past issues, visit our newsletter archives online at www.pathwayshealth.org/publications.
We have an amazing new service at Pathways—Care Management. This service provides a nurse or social worker to oversee the care of an older person when loved ones need help to manage the care or don’t live nearby. It can also provide one-time assessment and care planning for families. This is an all-encompassing, privately paid service.
Here are just some of the valuable services care managers provide:
- Scheduling and coordinating medical and dental appointments
- Transporting and accompanying clients to health care appointments
- Helping clients comply with medications and recommendations
- Arranging supportive services such as home care, bill paying, transportation, housekeeping, meal delivery or a handyman
- Overseeing caregivers and other providers
- Arranging for safety devices and medical equipment such as emergency response systems, grab bars, shower chairs and wheelchairs
- Providing crisis intervention and supportive counseling
- Long-term planning for appropriate housing options
Pathways’ first care manager is social worker Stephne Lencioni, LCSW. She is a long-time supporter of Pathways, often referring clients to us in her 25 years of care management with other organizations. We are thrilled to have the experience and expertise of such a respected care manager launching this program for Pathways.
This article was originally published in Pathways Physician & Health Professional Bulletin - Issue 26. To download this issue in PDF format, or past issues, visit our newsletter archives online at www.pathwayshealth.org/publications.
Fewer Hospitalizations
Telemonitoring puts technology to work improving the lives of Pathways’ heart failure patients. By catching problems earlier, it reduces hospitalizations.
Home Health nurses don’t visit daily, so telemonitoring gives Pathways a way to assess the patient 7 days a week, from our office.
The easy-to-use unit can give us the patient’s:
- Weight
- Blood pressure
- Heart rate
- Oxygen saturation
When a patient touches any button on the small unit, a friendly voice talks them through each step of the health check. Patients also receive the data, giving feedback.
The information is sent automatically to a nurse via telephone: there is no phone charge to the patient.
Nurses monitor the health information daily, call the patient if necessary, and make home visits when indicated.
Pathways Telemonitoring Program Criteria
- Patient has heart failure
- Patient or caregiver can understand and follow instructions, and are physically able to use the unit
- Patient or caregiver are open to telemonitoring technology
- Patient does not have an infectious disease (i.e. TB, MRSA, varicella zoster, herpes zoster)
This article was originally published in Pathways Physician & Health Professional Bulletin - Issue 26. To download this issue in PDF format, or past issues, visit our newsletter archives online at www.pathwayshealth.org/publications.
Two of every five patients who experience acute coronary syndrome (ACS) will have depression—a very important psychosocial predictor of poor cardiovascular prognosis.
“A growing body of evidence suggests that mental health problems complicate physical health conditions and that this relationship worsens clinical outcomes, increases hospitalization, and adversely affects quality of life,” Joseph A. Ladapo, MD, PhD, of New York University in New York City.
He and colleagues predicted that treatment of depression after ACS would be cost effective and improve patient outcomes. They conducted a randomized, controlled study comparing enhanced depression care with usual care in patients with ACS and persistent depression 3 months after discharge. Ladapo and colleagues defined enhanced depression care as problem-solving psychotherapy, antidepressant use or both.
Their conclusion at the close of the 6-month, prospective trial involving 157 patients was that treatment for depression reduced total per-patient healthcare costs by more than 40% and was cost effective for almost all patients.
An assessment of quality of life showed improved health utility in the intervention group. Interviews 6 months after discharge showed that in the intervention group 51% were using antidepressants or anxiolytics and 75% had visited a mental health specialist at least once for a total cost of $1,083. In the control group 30% were using antidepressants or anxiolytics and 35% had seen a mental health professional, for an average of $554.
The extra costs for the intervention group were more than offset by the significant reduction in hospitalization for ACS and heart failure (5% vs. 16%), with a mean cost savings of $1,782 for the intervention group and unmeasured improvement in quality of life.
Total healthcare costs averaged $1,857 in the intervention group and $2,797 for the usual-care arm, resulting in an adjusted difference of $1,229, which did not achieve statistical significance (P=0.09). Because the intervention was cost saving, the investigators could not calculate a cost-effectiveness ratio.
The research was reported in Arch Intern Med 2012; DOI: 10.1001/archinternmed.2012.4448, and was supported by the National Heart, Lung, and Blood Institute; the Health Resources and Services Administration; and the American Heart Association.
This article was originally published in Pathways Physician & Health Professional Bulletin - Issue 26. To download this issue in PDF format, or past issues, visit our newsletter archives online at www.pathwayshealth.org/publications.
Improves Quality of Life
There are more than 600 million visits a year between patients and alternative medicine providers in the US—and the number is growing.
You can call it alternative, complementary or integrated therapy—it is a group of diverse practices and products not considered a part of traditional Western medicine. But whether you are a skeptic or a proponent, there is no denying that the public is looking for it.
For those patients who want this kind of treatment, it undeniably works to improve their quality of life. After all, a hand massage with aromatherapy and soothing music would improve most peoples’ moods and lower their blood pressure and stress. As simple as that, quality of life is improved.
More and more hospices are adding Integrated Therapies to their armamentarium for achieving comfort and improving quality of life. As far back as 2004 60% of hospices reported offering complementary treatments (the most popular being music therapy and massage). The main obstacles to providing these services are lack of adequate funds, knowledge and qualified personnel. Other Integrated Therapies include animal visits, guided imagery and art therapy.
Pathways has a robust Integrative Therapies Program that provides numerous benefits. Patients report:
- A sense of control when so much control over their lives has been lost
- Improved pain management
- Enhanced emotional wellbeing and decreased anxiety
- Opportunities to experience pleasure
- Better quality sleep and decreased fatigue
- Enrichment in their lives
- Decreased nausea and enhanced appetite
Integrative Therapies often do not lend themselves to randomized, double-blind, controlled clinical trials due to the very subjective nature of the discipline. However, risk-benefit analyses demonstrate very low risk—won’t hurt, might help.
The holistic nature of hospice is a setting made for Integrative Therapies. They have repeatedly been shown to provide physical, emotional and spiritual benefits to patients and their families.
One Patient’s Story
Advanced pancreatic cancer was Mr. B’s grim diagnosis. A resident of a SNF, he had prognosis of a few weeks when referred to Pathways by the distressed facility. During the admission to hospice, the patient disclosed that he was a Christian Science practitioner and was not open to using any medications to manage his rather severe symptoms.
With this limitation, Pathways quickly initiated several Integrative Therapies and held a stat inservice for the SNF staff and his family. Hospice volunteers, personal care aides, spiritual care counselors, social workers and nurses all contributed their Integrative Therapy skills. Mr. B received massages, aromatherapy, guided imagery, Reiki, music therapy and comfort touch. We also involved the family, asking them to find movies, CDs and other forms of distraction that Mr. B would respond to.
Although his pain was never completely gone, the patient reported it was significantly decreased and that he noticed an improved ability to cope with the pain that remained. Until he died about three weeks after admission, Mr. B reported that Integrative Therapies had helped manage his symptoms to a level he deemed acceptable.
This article was originally published in Pathways Physician & Health Professional Bulletin - Issue 26. To download this issue in PDF format, or past issues, visit our newsletter archives online at www.pathwayshealth.org/publications.
