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

Special Diet Improves Mild Alzheimer’s

"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.

Sundown Syndrome

Sun Sets, Confusion Rises

Sundowning is the term that refers to increased confusion and disorientation in the late afternoon and early evening.  As many as 20% of people with dementia experience sundown syndrome. 

This behavior usually is at its most severe during the middle stages of Alzheimer’s, becoming less as the disease progresses.  Some studies show that sundowning is associated with faster decline in the ability to think and with faster disease progression.

People who have sundown syndrome may have mood swings and may be suspicious, agitated, yelling, lashing out at caregivers, pacing more, and have tremors.  They may have difficulty sleeping, and wander more and “want to go home” as light fades and shadows appear.  They may also be aware of their own confusion which can frustrate them more.

Causes

Although the causes of sundown syndrome are not proven, many experts believe that in Alzheimer’s the changes to the brain affect the part that regulates our bodies’ rhythms of sleep and wakefulness—the cluster of nerve cells that keeps the body on a 24-hour clock. Other possible causes include:

• Mental and physical fatigue, making the resident less able to cope with stress
• Low lighting, increased shadows
• Discomfort due to pain, urinary tract infection, fecal impaction, etc.
• Medications
• Hunger
• Noisy sleeping environment
• Lack of organized evening activities
• Too much sleep during the day
• Change of shift activity with many people coming and going

Management

This is especially the time to apply basic techniques for dealing with people who have dementia:

• Reassure the resident in a calm way; tell them they will be all right and that they are in a safe place.
• Don’t argue with the resident or ask why they are confused.
• Try to find out if they have a need; are they cold, hungry, wet, in pain?
• Remove the resident to a calmer place, such as outside or his room—somewhere with fewer people and noises.
• Change caregivers if there is a chance that this is upsetting the resident.
• Reminisce with the resident about bedtime activities they followed with their children when they were young parents.

Consider alternative techniques such as: aromatherapy, a pet, calming sounds (bubbling brook, birds, wind in the trees), soothing food or warm milk, singing a favorite song or hymn, reading a familiar poem or children’s book, gently brushing hair, putting on a favorite movie, or massaging shoulders (only with the resident’s permission and in a common area). 

Prevention

Preventing problems is the best form of managing them.  These suggestions won’t work for every person, but persistence pays off if you keep trying:

• Maintain a consistent sleep schedule and daily routines; limit daytime sleep to short naps.
• Increase activity during the day including some physical activity such as walking or dancing.
• Monitor diet; avoid caffeine, or serve only in the morning.  Offer a light, bedtime snack.
• Let residents choose where they are most comfortable sleeping. 
• Consider the use of melatonin to promote sleep.
• Keep a dim light on at night and the room uncluttered.
• Have the resident occupied during shift change if this seems related to the sundowning.
• If sundowning occurs at a certain time every evening, plan for it.  Have the resident involved in an activity during this time.

Seek medical advice if other measures don’t work.  There may be medical conditions contributing to the sundowning.  The physician can also review the resident’s medications to check for drugs that can be eliminated.

Always keep in mind that this behavior is not done on purpose—the resident may be as baffled by it as you are.  But good planning can help prevent and manage sundown syndrome.

References: Mayo Clinic online; Web MD; Alzheimer’s Association, Care & Compliance Group.

This article was originally published in Pathways Residential Care Journal - Issue 4.  To download this issue in PDF format, or past issues, visit our newsletter archives online at www.pathwayshealth.org/publications.