Helping People with Dementia Cope with Grief and Loss

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

Therapy by Telephone

Can therapy for depression work when done by telephone?  The short answer is yes.  This type of therapy may be slightly less effective than face-to-face meetings, but patients are less likely to drop out of phone therapy. 

These were the findings of David Mohr and colleagues at the Northwestern University Feinberg School of Medicine published in the Journal of the American Medical Association in June of this year.  Mohr said, “One of the things we’ve found over the years is that it’s very difficult for people with depression to access psychotherapy.”  The authors speculated that reducing time commitments, transportation problems and cost may play a role in the lower drop-out rate for phone therapy.

Around 25% of all primary care visits are with patients who have clinically significant depression, according to the authors.  Cognitive behavioral therapy is an effective treatment for depression, but the drop-out rate is high.

Researchers in the randomized study had 325 people diagnosed with depression undergo 18 weeks of therapy, half by phone and half in person.  The quality of the telephone therapy was calculated to be equivalent to in-person treatment. By the end of the period 53 participants had dropped out of face-to-face therapy compared with 34 in the phone therapy group.

Patients in both groups felt decreased levels of their depression, however six months later patients who met with their therapists in person tended to feel less depressed than those who had phone sessions, but the difference was very small.

“At this point these findings do suggest that psychotherapy for depression can be administered both safely and effectively over the phone. Providers can be comfortable doing that and insurers and payers should feel comfortable” reimbursing for it, Mohr said.  Cognitive behavioral therapy by phone, “can overcome barriers to adhering to face-to-face treatment.” 

This article was originally published in Pathways Physician & Health Professional Bulletin - Issue 25.  To download this issue in PDF format, or past issues, visit our newsletter archives online at www.pathwayshealth.org/publications.

Most Cancer Docs Reach Out to Bereaved

Seventy percent of cancer physicians contact bereaved family members and caregivers of their patients who die.  But of the 162 physicians surveyed, more than two thirds do not feel adequately trained to do this sort of reaching out.  These were the results of a study presented at the 53rd Annual Meeting of the American Society for Radiation Oncology (ASTRO).

Most of those surveyed sent condolence letters, and some called or attended funeral services.  One perceived barrier to bereavement follow-up is lack of time.  Another factor was uncertainty about which family member was the most appropriate person to contract.

“This study highlights the need to more clearly define the physicians’ role in bereavement activities and address bereavement activities in providers’ postgraduate training as we work to improve the multidisciplinary treatment of cancer patients and their families,” said lead author Aaron S. Kusano, MD, a radiation oncology resident at the University of Washington School of Medicine in Seattle. 

Source:  www.medicexchange.com/ASTRO-2011/most-cancer-physicians-reach-out-to-bereaved-family-caregivers-astro-2011.html.

This article was originally published in Pathways Physician & Health Professional Bulletin - Issue 23.  To download this issue in PDF format, or past issues, visit our newsletter archives online at www.pathwayshealth.org/publications.

Hospice Care Guide - Questions & Answers - Part Three

Pathways will be sharing the answers to some of the most commonly asked questions regarding hospice care beginning this week. 

Can we go to the hospital?     

Yes.  You can always go to the hospital.  Hospice asks that you call them first.  They may be able to manage your crisis at home.  If not, they can arrange transportation to the hospital.  There are times that the hospice may ask you to go to the hospital for a short stay if there is a problem that can be managed better there.

My loved one lives in a nursing home.  What can hospice do that they can’t?    

Nursing homes are experts in long-term care.  Hospice nurses are experts in symptom management and end-of-life care.  Hospice nurses are best equipped to deal quickly with health problems that arise.  Other benefits of hospice include more frequent personal care, volunteer visitors, paid medications and supplies, and bereavement follow-up for family members.

When should we think about getting hospice help?     

You can let your doctor know that you would like hospice care if it becomes appropriate.  You are entitled to at least six months of care, but some doctors hesitate to talk about hospice for fear you will think they are “giving up.”  Hospice is not giving up.  Just like you, we hope you do well.  Hospice is a way to be sure of the best care, no matter how things turn out. 

Is hospice linked to a religion?     

No.  Hospice care is only related to health insurance.  Because of the special nature of hospice care, we do make spiritual care counselors available to patients and families.  They can also help to link you to someone in your own faith community.

Who decides whether we get hospice?     

You do.  Your doctor authorizes care, but you decide if you want this care or not.  Sometimes the doctor calls hospice and asks us to contact you about hospice.  Some families call hospice and have us contact the doctor to ask for authorization.  Pathways will send someone, free of charge, to make an information visit if you need this.

Who makes our health care decisions when we are on hospice?      

You and your doctor are always in control of your care.  Hospice will make suggestions about your care, but you will always be in control.

What happens if my loved one is still alive at the end of six months?      

Hospice must periodically recertify that the patient has a prognosis of six months or less.  If at each of these dates it appears that the patient has six months or less to live, then the patient can stay on hospice.  If the course of the disease is slow, some people may be on longer than six months. 

Can we stop hospice care?

Yes.  Any patient can go off hospice at any time.  You can also come back on hospice if circumstances change.

What if the patient’s health improves? 

Sometimes with the extra care from hospice a patient’s health improves.  They may start eating more and be more active.  If they improve to the point that it looks like they will live more than six months, we will discontinue hospice care.  The patient can return to hospice in the future when needed.

What does hospice do for us after my loved one dies?  

A large part of hospice care is bereavement support for families and friends.  Pathways provides phone calls, newsletters, counseling, support groups, and remembrance events for families after a death.


Download a complete set of the questions and answers that we covered in this blog series by clicking here.

Grief: A Process

Feeling a Loss

Grief is the emotional suffering caused by a loss. It often begins before the loss, like the sadness upon learning that a resident or a loved one does not have long to live.  Spouses and others grieve for the companionship they will lose and dreams that won’t happen, that life will be changed forever.

Natural Process

Grief is a natural part of life. People express it in their own ways.  There is no timetable for grief and there is no right or wrong way to grieve.  It can come and go. 

Grief takes different forms at different times.  At first, the bereaved person may feel disbelief and expect to see their loved one even though they know the person is gone. 

They may also feel anger at being “abandoned” by the loved one.  Or they may feel guilt—for the anger, for still being here, or for things they may have said or done (or didn’t say or do).  These feelings are all normal.

When to Get Help

But there are times when grief is so intense or so prolonged that the health of the bereaved person is at risk.  There are some signs that let us know a person may need help in coping with their grief.

Although deep sadness is a natural part of bereavement, in some individuals death triggers a lasting depression that may cause withdrawal from friends and family, thoughts of suicide and lack of energy.   This is one of the times when outside help is needed.

Mild weight loss, fatigue, insomnia and anxiety may be expected early on.  But it may be time for the grieving person to see their doctor or a mental health professional if after three months or so you see:

• Intense feelings are not starting to lighten.
• Excessive weight gain or weight loss.
• More than 12 or less than 4 hours sleep a night.
• Constant crying.

For more information about grief support services available at no cost from Pathways, visit us online at www.pathwayshealth.org or call 1.888.755.7855.

Grief and the Holidays

Remembering

With the holidays come reminders of their loss for those who are grieving.  Others are savoring a time of joy, sharing memories, and coming together in love. For those who are grieving, the holidays are a vivid reminder of who is NOT there.

Many grieving people find this the most difficult time of the year.  They cannot forget and cannot bury the pain.  Their hearts, minds and bodies are grieving and not functioning in their full capacities, as though part of them is missing.  These are natural feelings—they are all a part of the process—they can share them, accept them, and feel them.

Ways of Coping

 
As the holidays approach, it may help for those who are grieving to start with a blank slate. Accept that they may not have the energy or desire to accomplish all the things that people have come to expect during the holidays.

Rather than do things automatically, they can discuss and think about what they really want to do, what they don’t want to do, and what will be difficult but they want to try anyway.  Grief experts encourage people not to be afraid to change traditions or start new ones.

Equally important is to acknowledge how one feels.  Many recently bereaved worry they will spoil the holidays for others.  According to families Pathways has counseled, the most painful thing is when they try to keep their feelings inside. 

If friends or family members take the initiative to talk about the person who has died, it relieves the tension and creates an opportunity for sharing. 

Managing Grief

 
While there are no universal methods for healing and coping, there are some concrete things a person can do that may make the holidays easier and provide an opportunity to honor loved ones who have died.  

Grieving families can:

• Acknowledge the grief; accept whatever mood occurs.
• Remember they are not alone.  Attend a remembrance event or grief support group.
• Give themselves permission to let go of certain traditions—it’s okay to make changes.
• Share plans with others; let them know how they can help.
• Reserve time to honor the loved one quietly, alone or with others—light a candle, place a photograph on the table, share memories, or make a memorial donation.

And finally, grieving family members should remember to care for themselves at this time.