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.

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.

A Twist on Cultural Diversity

In the Bay Area, where diversity is the norm, caregivers often represent cultures from all over the world, while the residents they care for may be mostly white, Anglo-Americans whose only language is English.  Perhaps a look at Anglo-American culture will reveal ways to improve interactions between caregivers and residents.

In an ideal world, two people trying to communicate would each reach out to understand the other’s culture.  Realistically, residents may not be capable of learning about the caregiver’s culture to meet the caregiver halfway.  It defaults to the caregiver to bridge the gap.

Generalizations

Although no statement about someone in a particular culture holds true for all members of that culture, we can make useful generalizations that steer us in the right direction.  For example, Anglo-Americans tend to be:

• Time oriented and more rigid about times: 10:45 means exactly 10:45.
• Direct, with less socializing before getting down to business.
• Less formal, speaking and acting casually.
• In general, Anglo-Americans want to be pain-free and may not be as stoic as some other cultures.  They may ask for pain medication where a person from another culture might “tough it out.” 

Comfort zones

Anglo-Americans may be more open about discussing personal matters, illness, and dying than others. 

If a resident wants to talk about a subject that makes you uncomfortable, you may want to find someone else who might be able to interact with him more directly—perhaps someone from social services, a chaplain, or another caregiver.

Researchers have demonstrated that Anglo-Americans generally require a larger personal space around them—in other words, they don’t stand as close when talking as people of other cultures do.*  For instance, they may become uncomfortable and step back if they feel another person is standing too close.

Independence

Anglo-Americans as a whole tend to be more individually oriented and like control. They leave less to fate and want to direct their own lives. American law requiring informed consent is based on the principle of autonomy—freedom of choice for the individual.  In other cultures the family or physician may make decisions for a patient, whereas in the US the individual is considered more important to decision-making than the family. 

Many Anglo-Americans see themselves as having a pioneer spirit and prefer not to be dependent on their children for care or support, while in other cultures it is expected that older people will live with their adult children. 

Best practices

Whenever cultures differ there is plenty of room for misunderstandings.  Usually neither is right or wrong—just different.  The best practice for communicating smoothly is to ASK.  Ask family members or the resident about how things are done in their family.   People are usually grateful that you are asking and appreciate that you are trying to learn about how they like to do things.

*The New York Times, “In Certain Circles, Two Is a Crowd,” Nov. 16, 2006.

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

Managing Stress

Set Worries Down

The instructor of a stress management class walked into the room holding out a half glass of water. Everyone in the class thought they knew what was coming: “Is the glass half full or half empty?”

But the instructor surprised the students by asking with a smile, “How heavy do you think this glass of water is?”  People called out answers ranging from 6 ounces to 20 ounces.

The teacher replied, “It changes.  It depends on how long I hold it—the absolute weight doesn’t matter.  If I hold it a minute, it is light.  If I hold it an hour, it is heavy and I will have an ache in my arm.  If I hold it for a day, it will be too heavy to lift and I will drop it. 

“It seems the longer I hold it, the heavier it becomes.  If, however, I set it down when it feels heavy and rest a while, I have the strength to hold it again.

“It is the same way with stress,” she said.  “If we carry our burdens all the time, sooner or later, the burden becomes too heavy and we won’t be able to carry on.

“Just like with the glass of water, you have to put down your burdens for a while and rest before shouldering them again.  When you are refreshed, you will be able to take up the burden, stronger again.”

So, put aside your burdens whenever you can; they will still be there after you have rested and you will be able to carry on as strong as ever.

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.

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.

Grateful to Give Back: An Interview with Pathways Volunteer, Bill Jennings

Pathways Home Health & Hospice recognized Bill Jennings of Milpitas, California for outstanding volunteer service by honoring him with the Kennedy Award. Bill has been a volunteer at Pathways Home Health & Hospice since 2006, and is an active member of both bereavement and patient care teams.

A retired trainer with Sony Electronics, Bill has found many opportunities to adapt his professional skills to his volunteer work at Pathways. He uses his interpersonal skills when visiting patients and their families, where he provides companionship, and comfort. He uses his technical skills by creating and maintaining two databases for tracking the non-profits’ bereavement library and Integrative Therapies practices.

We recently sat down with Bill to ask him a few questions about his volunteer experiences at Pathways.

What does being a Pathways volunteer mean to me? 

• Self fulfillment, personal growth
• Appreciation from the patients and family you serve

What type of volunteer work do you do and which do you like the best?

• Hospice visits for companionship with patients and caregiver relief
• Bereavement calling to families who have lost a loved one
• Integrative therapies committee

What would you say to those who are considering volunteering at Pathways?

• So many opportunities to give back
• What skills do you have that you would like to share with others?

We appreciate you taking the time to talk with us today.  Thank you, Bill! 

Benefits of Volunteering

Volunteers often find that their greatest satisfaction comes from contributing to the wellbeing of others. They also have the opportunity to apply their talents in fields different from their usual work. For some, volunteering may even lead to a new career. Their gifts of time, energy, and skills fill a unique role that only they can provide. Many volunteers tell us that they learn from working with other dedicated professionals and volunteers.

Finding Your Niche at Pathways

To explore volunteer opportunities at Pathways, call the Manager of Volunteer Services in your area, or visit the “Apply to be a Volunteer” section of our website. After completing an application, you’ll meet with a representative from Volunteer Services to help you find your place at Pathways.

Contact Pathways

In Santa Clara County: 408.773.4219; in Alameda; Contra Costa Counties: 510.613.2017; and in San Francisco and San Mateo Counties: 650.808.4604.  Or visit us online at www.pathwayshealth.org.

Dental Hygiene Related to Heart Disease

New Evidence

You may not be a dentist, but get those patients to brush their teeth! People who brush their teeth less than twice a day run a higher risk of heart disease. These are the findings of a recent study published in the British Medical Journal.*

This is the first study of its kind and confirms the established fact that inflammation in the body (including mouth and gums) plays a significant role in the formation of atherosclerosis. Researchers analyzed health data from 11,000+ adults. After adjustment for established risk factors, the study found those with poor oral hygiene also had increased levels of C-reactive protein and fibrinogen. 

Personal Care Services at Pathways 

Pathways Private Duty provides care to assist older adults and the chronically ill in their activities of daily living, as well as with meal preparation, exercises and medication reminders.  Our caregivers can also help with personal care such as bathing, grooming, and oral hygiene.  

When it's time for care in your home, Pathways is here to help.  Give us a call today at 1.888.600.2273 to arrange for an evaluation and assessment of your needs.

*Published online May 27, 2010 in BMJ; corresponding author is Prof Richard Watt (University College London, UK.)