Dementia and the Holidays

As fun as the coming holidays can be, they can be packed with hazards for people with dementia. It means caregivers and families need to be especially vigilant about the safety.

Many decorations look like food and may even smell like the real thing. For instance, a Christmas tree decoration that looks like a gingerbread man may be even scented with gingerbread smell—making doubly appealing to try to eat. Other small decorations can be choking hazards. Artificial fruits, vegetables and nuts can look very real.

Candles that smell like pumpkin or apple pie can be a fire hazard if tipped over if a person reaches into it. Poinsettia leaves, contrary to popular belief, are not poisonous—but they will make a resident nauseated if he or she eats them.

People with dementia need routines—the same activities, in the same place, at the same time. Families should consider this carefully before deciding to take a loved one home for a holiday. The excitement, the car ride, change in surroundings and many people talking can cause the confused person with dementia to become agitated or upset.

Here are some tips for family members planning to take a loved one home for a holiday.

Planning

• Plan ahead. Let the facility staff know several days ahead so they have time to obtain medications and clothes.
• Allow extra time for everything, don’t rush the person.
• Try to keep as much as possible to their daily routine.

Decorations

• Use ribbon instead of sharp hooks when hanging decorations.
• Holly and mistletoe can be poisonous and berries pose a choking hazard.

Festivities

• Begin new traditions by letting another family be the host but try to go to a place familiar to your loved one.  
• Assign tasks to other family members so you do not become overloaded and stressed, which in turn causes your loved one to be stressed.
• Provide a nap before festivities. If you know the day will be long, you may want to attend only the most important part of the event.
• Plan for a quiet place for your loved one to go to if he or she becomes overwhelmed.
• Avoid alcohol.
• Be aware of their diet and diet restrictions. Cut up food into small bites.

Visitors

• Let your loved one know who is coming to visit.
• Have visitors and family call ahead to determine best time to visit.
• Small groups of visitors or family is advisable. Have them wear name tags as this might help with recognition.
• Reintroduce yourself as necessary. “Mary, my name is Betty.” And when she asks, “Are you my granddaughter?” say “yes” and shake her hand and act very comfortable about this introduction.
• If your loved one begins talking about the past, try not to reorient him or tell him he is wrong. Enter his reality and live his truth. Ask about the past memory.

Activities

• Reminisce about the past.
• Play holiday music familiar to your loved one.
• Read holiday cards aloud.
• Stuff stockings, watch a holiday video, look at family slides or pictures or albums, read scriptures, etc.

The Kitchen

• Monitor your loved one while in the kitchen.
• Give your loved one task to help with baking or decorating. Try baking cookies, making pudding, folding napkins, polishing silver, etc.
• Always check the microwave before turning on in case something was put in that is flammable.
• Check all trash cans before throwing out garbage

Shopping

• Don’t leave your loved one in the car or in the front of the store.  If you can’t take them in with you, try to arrange for someone to stay with your loved one.
• Shop during hours when stores are less crowded.
• Dress your loved one in a bright yellow shirt which is easy to see if you become separated. Be sure they have a purse or wallet with identification.
• Shop in smaller stores rather than the mall.

Travel

• People with dementia should never travel alone. Hire a personal care aid to travel if a family member is unable to accompany the resident.
• Be aware of balconies and other hazards in hotels.
• Travel may not be appropriate even with a companion if the person has:

1. Consistent disorientation or agitation in familiar settings
2. Wanting to go home when away from home on short visits
3. Delusional, paranoid, aggressive or disinhibited behavior
4. Problems managing continence
5. Teary, anxious, withdrawn behavior in crowded, noisy settings
6. Agitated or wandering behavior

Additional resources for caregivers.

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.

Dementia and the Holidays

As fun as the coming holidays can be, they can be packed with hazards for people with dementia. It means caregivers and families need to be especially vigilant about the safety.

Many decorations look like food and may even smell like the real thing.  For instance, a Christmas tree decoration that looks like a gingerbread man may be even scented with gingerbread smell—making doubly appealing to try to eat.  Other small decorations can be choking hazards.  Artificial fruits, vegetables and nuts can look very real.

Candles that smell like pumpkin or apple pie can be a fire hazard if tipped over if a person reaches into it.  Poinsettia leaves, contrary to popular belief, are not poisonous—but they will make a resident nauseated if he or she eats them.

People with dementia need routines—the same activities, in the same place, at the same time.  Families should consider this carefully before deciding to take a loved one home for a holiday.  The excitement, the car ride, change in surroundings and many people talking can cause the confused person with dementia to become agitated or upset.

Here are some tips for family members planning to take a loved one home for a holiday.

Planning

• Plan ahead.  Let the facility staff know several days ahead so they have time to obtain medications and clothes.
• Allow extra time for everything, don’t rush the person.
• Try to keep as much as possible to their daily routine.

Decorations

• Use ribbon instead of sharp hooks when hanging decorations.
• Holly and mistletoe can be poisonous and berries pose a choking hazard.

Festivities

• Begin new traditions by letting another family be the host but try to go to a place familiar to your loved one.  
• Assign tasks to other family members so you do not become overloaded and stressed, which in turn causes your loved one to be stressed.
• Provide a nap before festivities. If you know the day will be long, you may want to attend only the most important part of the event.
• Plan for a quiet place for your loved one to go to if he or she becomes overwhelmed.
• Avoid alcohol.
• Be aware of their diet and diet restrictions. Cut up food into small bites.

Visitors

• Let your loved one know who is coming to visit.
• Have visitors and family call ahead to determine best time to visit.
• Small groups of visitors or family is advisable. Have them wear name tags as this might help with recognition.
• Reintroduce yourself as necessary. “Mary, my name is Betty.” And when she asks, “Are you my granddaughter?” say “yes” and shake her hand and act very comfortable about this introduction.
• If your loved one begins talking about the past, try not to reorient him or tell him he is wrong.  Enter his reality and live his truth.  Ask about the past memory.

Activities

• Reminisce about the past.
• Play holiday music familiar to your loved one.
• Read holiday cards aloud.
• Stuff stockings, watch a holiday video, look at family slides or pictures or albums, read scriptures, etc.

The Kitchen

• Monitor your loved one while in the kitchen.
• Give your loved one task to help with baking or decorating. Try baking cookies, making pudding, folding napkins, polishing silver, etc.
• Always check the microwave before turning on in case something was put in that is flammable.
• Check all trash cans before throwing out garbage

Shopping

• Don’t leave your loved one in the car or in the front of the store.  If you can’t take them in with you, try to arrange for someone to stay with your loved one.
• Shop during hours when stores are less crowded.
• Dress your loved one in a bright yellow shirt which is easy to see if you become separated. Be sure they have a purse or wallet with identification.
• Shop in smaller stores rather than the mall.

Travel

• People with dementia should never travel alone.  Hire a personal care aid to travel if a family member is unable to accompany the resident.
• Be aware of balconies and other hazards in hotels.
• Travel may not be appropriate even with a companion if the person has:

1. Consistent disorientation or agitation in familiar settings
2. Wanting to go home when away from home on short visits
3. Delusional, paranoid, aggressive or disinhibited behavior
4. Problems managing continence
5. Teary, anxious, withdrawn behavior in crowded, noisy settings
6. Agitated or wandering behavior

Please visit our website to download additional resources for Caregivers.

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.

Reasons to Get Online & On Your Feet

Agile Minds

We have known that mental activity staves off cognitive impairment, and the same is known about exercise.  But is it even more effective if seniors do both?  It looks like the answer is yes.

Research involving seniors ages 70 to 93 demonstrated that any amount of moderate exercise in conjunction with using a computer during the previous year resulted in a 64% less likelihood of mild cognitive impairment compared with those who reported neither activity.

According to lead researcher, Yonas Ged, MD, of the Mayo Clinic in Scottsdale, AZ, there was a significant additive effect when both exercise and the computer were employed.  Geda and colleagues examined data from the Mayo Clinic Study of Aging, an ongoing population-based study of individuals living in Olmsted County, Minn. The analysis included 926 men and women who did not have dementia.  The researchers controlled for age, sex, education, medical co-morbidity, and depression.

Among seniors who had normal cognition, 36% reported getting any moderate exercise and using a computer in the previous year.  Among those with mild cognitive impairment, only 18.3% reported both exercise and computer use.

The study was reported in the May, 2012 issue of Mayo Clinic Proceedings and was supported by grants from the NIH and numerous foundations.

This article was originally published in Pathways Physician & Health Professional Bulletin - Issue 24.  To download this issue in PDF format, or past issues, visit our newsletter archives online at www.pathwayshealth.org/publications.

Managing Agitation in People with Dementia

Agitation in dementia has many possible causes.  It can be a result of degeneration of the nervous system which may lessen a person’s ability to cope.  Another huge factor is that the resident is unable to communicate a need.

Six Triggers
Researchers have identified six main causes of agitation in dementia.  As caregivers, it is our job to do the detective work to find out what the cause might be.  We need to imagine ourselves in his or her shoes to help figure out the trigger.  If at first you don’t succeed…be persistent, keep digging!  And always consider a combination of factors.

Fatigue: Most of us tend to be more irritable when tired and people with dementia are no exception.  Did the resident get enough sleep last night?  Has he had more activity than usual today?  You can ask, “Would you like to rest now?” 

Change: People with dementia usually like routine—everything done the same way, at the same time, every day.  What’s different today?  Think of anything new: maybe a new caregiver, clothes, holiday decorations or a change in lunch time or bath time.

Perception of loss: If the resident is reliving a loss such as the death of a loved one, empathy followed by distraction may work to divert the person’s attention.  If the loss is the perception that something has been taken, help the resident to look for it.  If the loss centers around money, it may help the resident if the family will bring in some loose change to keep in the resident’s pocket so he can be reassured that he has his money or his wallet.

Stimulus levels: Consider the environment.  What is going on around the resident?  Some people react negatively when there is too much noise, too many people or too much activity.  Others may tolerate this normally, but react badly when they are more tired.  This might be a time to walk the resident to a quiet area or his or her room where they have a chance to feel calmer.

Is it possible the resident is under-stimulated?  Could he be bored or restless?   Perhaps he or she needs physical activity such as a walk outside.  Could she be lonely?  You can ask family members to make a video of themselves doing routine activities for the resident to watch when she misses them.

Excessive demands: With dementia comes the loss of the ability to process multiple thoughts at one time.  People with dementia can’t multi-task or multi-think.  So we need to be careful in our communications that we only make one brief request of them at a time.  Saying “Brush your teeth, then you can get into your pajamas and ready for bed” may simply be too many concepts.  You may be more successful breaking it into bite-sized chunks: “Now it’s time to brush your teeth.”  When that is accomplished: “Now it’s time to put on your pajamas.”

Physical stressors: Rule out pain: it could be a headache, a pebble in the shoe, a stomach ache, a urinary tract infection or clothes that are too tight.  Look for signs of injury: red spots or bruises, limping, a bump on the head or holding a body part.  Look for signs of infections such as a rash, redness, runny nose or strong smelling urine.  Could the resident feel cold or hot and unable to tell you?  Is he or she uncomfortable due to wet briefs?

Communication

One of the greatest frustrations of having dementia is not being able to clearly communicate your wants and needs.  But we can do a lot to facilitate better communication.  First we need to make sure the resident is ready to communicate: are his glasses clean?  Is her hearing aide in, turned on and does it have a good battery?

Now the resident may be ready to communicate, but are YOU?  You should identify yourself every day, sometimes more than once a day.  Don’t assume the resident will remember you just because he knew you last week. 

Key Principles

It is essential that you know what the person’s limitations are.  If he or she has had a stroke it is important to know what parts of speech and thinking were affected.  Sometimes a stroke leaves the person unable to understand speech, other times he understands but cannot get the right words out.

Remember that agitation is a symptom that means something else is wrong.  It is the job of caregivers to figure out what the real cause is.  So when the resident is agitated, put on your detective hat and see if you can’t solve the mystery at the bottom of the behavior.

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.

Alzheimer's Tracks Mapped

Surprising results of recent research show that Alzheimer’s disease (AD) seems to spread from one brain cell to the next.  Instead of a virus or bacteria, a distorted protein known as tau is being spread.

Theoretically the disease could be stopped in its tracks by halting transmission from cell to cell—maybe with a tau-blocking antibody.  The study results will have immediate implications for developing new treatments, according to researchers working independently at Columbia and Harvard.  They likened imagined treatments for halting the disease to treating cancer while in its early stages before it has spread.

For many years researcher tried to unravel the mystery of how AD spreads.  Did lesions pop up independently of one another throughout the brain, or did AD spread outward like contagion from the memory center where it first emerges?

The means to the solution was provided by genetically engineering mice to accumulate abnormal human tau proteins in the entorhinal cortex, where cells first start to die in AD.  Following the mice over two years yielded the information they were looking for.  Since human tau proteins could not spontaneously appear in isolated pockets of mouse brains, they could only arrive at other areas via transmission from cell to cell.

As researchers mapped the path of the human tau protein they saw it spread outward from the entorhinal cortex to hippocampus to neocortex—the same progression as seen in humans. Researchers are now asking whether other degenerative brain diseases, such as Parkinson’s, may spread the same way.

The Columbia University study was done by Karen Duff and Dr. Scott A. Small and their colleagues at the Taub Institute for Research on Alzheimer’s Disease and the Aging Brain at Columbia University Medical Center and was published in the journal “PLoS One”.  Another study was led by Dr. Bradley T. Hyman, Director of the Alzheimer’s Disease Research Center at Massachusetts General Hospital and was published in the journal “Neuron”.

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.

Antidepressants in Dementia

As many as 20% of patients with dementia may also have depression.  The usual treatment is a selective serotonin reuptake inhibitor or a noradrenergic and specific serotonergic antidepressant.  But some research has questioned the effectiveness of these treatments.

In a study published in The Lancet, (volume 378, Issue 9789, pages 403 - 411, 30 July 2011), Sube Banerjee MD, a London-based expert in old age psychiatry, and his colleagues concluded that because there was an absence of benefit compared with placebo and increased risk of adverse events, the practice of using these antidepressants should be reevaluated.

“Depression is one of the most important co-morbidities in dementia.  It is a source of great distress yet the treatments we use are not proven,” said Dr. Banerjee.

In their parallel-group, double-blind, placebo-controlled study of more than 326 patients with Alzheimer’s dementia, decreases in depression scores at 13 and 39 weeks did not differ between 111 controls and 107 participants allocated to receive sertraline (Zoloft) or 108 who received mirtazapine (Remeron).

“I am surprised by just how unequivocal our findings are,” said lead author Banerjee, professor of mental health and aging at King’s College London, Institute of Psychiatry, United Kingdom.  “The present practice of use of these antidepressants with usual care for first-line treatment of depression in Alzheimer’s disease should be reconsidered,” write the authors.

“The message is to think before using antidepressants for depression in dementia.  It may well be that these symptoms will resolve with the problem-solving and information-giving that is implicit in good-quality dementia care,” added Dr. Banerjee. The investigators suggest that antidepressants be reserved for “individuals whose depression has not resolved within 3 months of referral, apart from those in whom drug treatment is indicated by risk or extreme severity.”

Funding for this study was provided by the UK National Institute of Health Research HTA Programme.

Coffee May Help Depression

You may have read about the benefits of one or two cups of coffee a day: reduced risk of type 2 diabetes, Parkinson’s disease and dementia.  Now it looks as though a little java may also decrease the risk for depression.

“There is certainly much more good news than bad news, in terms of coffee and health,” says Frank Hu, MD, MPH, PhD, nutrition and epidemiology professor at the Harvard School of Public Health.

New research published after a 10-year study of more than 50,000 older women suggest that the risk for depression may decrease as coffee consumption increases.  Those who drank 2-3 cups a day had a 15% decreased risk of depression compared to women who drank one cup a day or less.

“People have often worried that drinking caffeinated coffee might have a bad effect on their health, but there is more and more literature, including this study, showing that caffeine may not have the detrimental effect previously thought,” according to lead author Michel Lucas, PhD, RD, epidemiologist/nutritionist at Harvard School of Public Health in Boston.

The study is published in the September 26 issue of the Archives of Internal Medicine.

Visiting a Friend or Loved One with Dementia

Dementia is a progressive disease that is measured not in months, but in years.  As the disease progresses it may become difficult to visit the patient—he may not recognize you, she may not be able to converse with you, or you don’t know if the person even realizes you are there.

Why Visit?

You may question if there is any reason to visit any more.  With dementia it can be hard to know how to be supportive, especially at the end of life.  

There is a good reason to visit—you can make a difference.  The focus of visits shifts; instead of expecting an exchange of pleasantries, your motivation becomes, “What can I do to improve quality of life?”
 
Your visit really begins with you, at home.  You may want to think about your feelings.  Am I frightened I too will end up with dementia? Am I afraid of the end of life?  What do I want to accomplish in my visit?

Planning the Visit

Visiting a person with dementia can be frustrating and unrewarding when you feel as though there is nothing you can do.  You may be able to make the visit more meaningful with some preparation.

Gather together some supplies so that you are prepared for whatever the situation is when you arrive.  A few ideas are:

• Knitting, a crossword or a book to read if the patient is sleeping
• A picture book with large colorful or interesting images
• Interesting photos someone has sent you in an email
• Music you know the patient likes
• A newspaper column, such as Dear Abby or the sports page to read aloud
• A photo album
• A special memento
• A letter from a mutual friend to share
• A nail file and polish for a manicure
• The patient’s favorite perfume
• A favorite food
• Lotion for a hand or foot massage
• A pet, if allowed

The sky is the limit.  Use your imagination and everything you know about the person to come up with ideas of things to share.  The resident may want to listen to news about her book club, his former poker buddies or the doings at church.

The Visit

Begin with the basics.  The visit will be more successful if the resident is clean and dry, not hungry, and comfortable.  Ask for help if needed.
 
Pain can sometimes appear as negative behavior.  People with dementia may withdraw, strike out or display other “bad” behaviors when in pain.  If you have seen behavior changes that you suspect may be due to discomfort, you may want to ask the caregiver for a trial of pain medicine.

Think about providing comfort through the senses.

Touch

We all need to be touched, but seniors are often deprived of this essential element to wellbeing.

• Our society is youth-centered and may look at wrinkled skin as ugly, not weathered with experience.
• Among hospitalized patients, the only ones touched less than the elderly were people who were psychotic.

Touch can be “instrumental;” that means required to carry out activities such as bathing or dressing.  But research shows that people with dementia can tell the difference between this and “expressive” touch.  Expressive touch is when we hold hands, put an arm around the person, or give a back rub or hug.  This conveys acceptance, nurturing and caring.

Expressive touch helps the elderly feel less isolated, dependent and depressed.

• One researcher found that it also made the toucher feel better.  They felt this non-verbal communication conveyed trust, reassurance, and love, and that it instilled hope.
• Others described touch as making a person feel psychologically worthy and have a sense of being cared for and cared about.
• It is no coincidence that the ultimate form of punishment is solitary confinement—no touching.

Caring touch can trigger the brain to release endorphins and serotonin—natural chemicals that suppress pain and depression.  This is one reason massage can lower the perception of pain.

• Massaging a loved one’s hands or back can help significantly while waiting for pain medicine to work.
• Brushing the resident’s hair and applying lotion have the same affect.

Hearing

We know that hearing seems to remain intact until the very end of life.  This gives us an opportunity for providing comfort.

• Soft music can be very soothing to an agitated resident.
• If the resident has been religious, he may appreciate hearing hymns and spiritual music.  Bring in CDs or tapes of his favorites and a CD player to play them on.
• You can even sing or hum a familiar tune.
• Bring in a music box.

Communication
 
If you are not close, calling residents with Alzheimer’s disease “sweetie,” “dear,” “cookie,” or “honey” may cause more resistance to care.  Experts have known for a long time that mentally competent elderly residents in nursing homes are irritated by being “talked down to.”  Recent research shows people with dementia are more agitated when talked to this way.

What they found was that residents were more resistant if the communication was what they dubbed “elderspeak.”

• Saying things like, “Are we ready for dinner?”  implies that the person isn’t able to act independently.  An alternative would be, “Are you ready for me to help you with your dinner?”
• The tendency of caregivers to use “elderspeak” increases with the caregivers perceived level of infirmity of the resident.
• We need to remember that residents were high functioning adults.  The more we remember their earlier lives, the more we respect them as people than as a disease.

Just chatting can be very reassuring.  “I spoke with Michael today, back in Virginia.  He says he and Alice are going to take a trip to Vermont.  They are going as soon as the snow melts.  It’s February now, so it may be a couple of months.”

Maintain the resident’s dignity in small ways: use terms like “disposable briefs” instead of “diapers.”  Remember to speak slowly.  People with dementia take longer to process what you have said.
 
Sense of Smell

This sense is so basic that when we smell a certain odor, it can bring back memories from decades ago.

• Aromatherapy takes advantage of this by providing pleasant smells that might bring back pleasant memories.
• Bring a rose, a lavender sachet, or a scented candle that smells like pumpkin or apple pie.
• A favorite perfume or aftershave can brighten spirits.

Taste

• Bring in a favorite food or drink.  The resident may love Fritos or M&Ms and they won’t be on the menu in assisted living.
• Cleaning the mouth with minty toothpaste or mouthwash on a 4x4 may be refreshing.

We have to be very careful about anything in the mouth at the end of life.  With dementia, all the muscles get weaker and weaker—including the muscles for swallowing. 

• Food or fluids can easily get into the airway, causing aspiration pneumonia.

Textures

• A resident in a facility has little chance to experience unusual textures, such as soft fur or a smooth, cool stone.  A pet or even a stuffed animal may provide comfort.
• Wrapping someone’s hands or feet in a hot, wet towel might feel very soothing and relaxing—the spa treatment!
• Find a way to warm a flannel blanket to wrap the resident in.
• Smooth the sheets or put cool, clean sheets on.  Change the pillow case or turn over the pillow.
• Open a window to feel a breeze.

Imagination

Use your imagination.  Think about what would bring you comfort.  What would feel good to you?  For each visit plan a simple, new, creative way to bring pleasure, serenity or comfort.  Quality of life will improve for both of you.

Want to Learn More?

Visit our website's Caregiver Resource page for more information and helpful hints when caring for a friend or loved one with dementia. 

When Capacity Is In Question

Let’s say your patient is in the earlier stages of dementia when a malignancy is discovered. Who decides his treatment options? Despite his dementia, it’s possible that it should be the patient himself.

Decision-making capacity is defined as “the patient’s ability to make his or her own decisions about accepting or rejecting medical procedures or treatments,” according to an article in the Journal of Palliative Medicine (November 2009). Author Frank Clore, a hospice spiritual care counselor, lists five considerations for the healthcare professional:

1. Does the person understand the facts involved in making the decision?
2. Does he “have an appreciation of the nature and importance of the decision to be made, including potential alternative choices?”
3. Does he understand the benefits and risks of the decision?
4. Can he communicate the decision to others, including the reasons for making the decision?
5. Can he “deliberate based on consistent personal values?”

Clore suggests that you may be able to elicit the answers using these assessments:

• Ask the patient to explain what he/she understands about his/her illness and about the proposed treatment.
• Ask what the patient thinks about the proposed treatment, how it may help him/her, and what will happen if the treatment is not chosen.
• Ask the patient to repeat his/her choice; answers should be consistent over time.

As with all patients, but especially those whose capacity for decision-making is in question, Clore reminds us the patient should be properly informed and free of coercion, and that the patient be “assessed in relationship to a specific decision, at a specific time, and in a specific context.”

For more information about healthcare decision making visit www.finalchoices.org or visit our website www.pathwayshealth.org.