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. 

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.

Sitting is a Risk Factor for Death

Spending Leisure Time

If you get home from work and want to plop down in a chair for the evening—think again.  You may want to take a break, but get moving again.  A study of more than 120,000 people found that those who spend at least 6 hours of their leisure time sitting died sooner than those who sat less than 3 hours.

People who sit a lot and exercise little are at even higher risk of death, and the effect is stronger for women than men.  The death rate was about 40% higher in women, and 20% higher in men.  The least active women were 94% more likely to die and the least active men were 48% more likely to die.  (100% would mean you were twice as likely to die.)

The study was conducted by the American Cancer Society over 14 years and looked at people 50-74 years old when the study began in 1992.  The main risk linked to sitting was heart disease.

“It is beneficial to encourage sedentary individuals to stand up and walk around as well as to reach optimal levels of physical activity,” according to the study’s authors.  The findings appear in the July 2010 issue of the American Journal of Epidemiology.

Melanoma: Look for the Ugly Duckling

Atypical Even for Atypical

A group at Memorial Sloan-Kettering Cancer Center in New York found that moles in the same person tend to look alike, but a malignant melanoma will often look different from the individual’s mole pattern—the “ugly duckling sign.”

Identifying pigmented moles that look different from a person’s other moles—“even in those with multiple atypical nevi,” said Dr. Ashfaq A. Marghoob, is a practical way to spot malignant melanoma. His research was published in the Archives of Dermatology.

Marghoob and his colleagues had 34 people with varying levels of expertise identify ugly duckling moles in patients with several atypical moles. Participants included 8 mole experts, 13 dermatologists, 5 dermatology nurses, and 8 non-MD medical staff members.  They were shown photographs of the backs and close-ups of moles from 12 patients who had five melanomas, at least eight atypical moles and 140 benign pigmented moles.

All five melanomas and benign moles were identified as different by at least two thirds of the participants.  Investigators concluded that the usefulness of the ugly duckling method in malignant melanoma skin cancer screening by general health care providers and lay persons “should be further assessed.”

Managing Pain Without Medication

In addition to medication for pain, there are other things we can do to reduce pain.  Usually these are used in addition to medicine or while waiting for the medicine to work.  But if a resident refuses pain medication, using these techniques may help.

Alternatives to Try

Distraction:  This is an effective technique.  It’s as though the brain can only pay attention to one thing at a time.  Talking, watching TV, playing games or looking at photo albums are some examples.  If the pain is severe, these will not work.

Deep breathing / relaxation exercises:  Guide the person in deep, slow, rhythmic breathing.  There are many relaxation recordings available that are easy to follow.  You can suggest to family members that they purchase relaxation recordings and furnish a listening device.

Cold:  A cold pack (gel pack, ice pack, or zip bag with crushed ice) helps inflammation or muscle ache.  Wrap the pack in a towel; do not put the ice pack directly on the skin.  Even if this does not relieve all pain, it may help to numb the area somewhat.

Warmth:  A warm tub bath or warm packs can relax muscles that have tightened due to pain.  A warm, wet washcloth applied directly to the affected area may help.  Covering the cloth with plastic will help retain the heat longer.

Massage: This is an excellent way to distract from pain and relax tense muscles that make the pain worse.  Lotion may reduce friction.  You do not have to massage the painful area.  Massaging another area of the body may distract the mind from pain.

Prayer / meditation: Some people find this very comforting and perceive less pain during prayer.  There may also be rites or rituals that could comfort the resident.  Ask family members about this.

Music: Music is another form of distraction that research has shown relieves pain.  It does not matter what kind of music, whatever the resident likes will work.  Again, family members can help provide information about musical tastes and recordings and a CD player.

Energy work / therapeutic touch: These are hands-on techniques in which the practitioner places his or her hands on the resident’s clothed body to achieve a transfer of energy.

Acupressure / acupuncture: These techniques apply pressure or needles to specific points on the body to relieve discomfort in other areas that are associated with those points.

Reflection / life review: Those nearing the end of life often want to reflect on the events of their lives and the people they knew.  Asking about family members or the resident’s youth or birth place may assist in starting this kind of life review.

Pets: Research shows that pets improve mood, lower blood pressure and heart rate, and may serve as a good distraction from pain.

Innovative Program at Pathways

Pathways Hospice patients can take advantage of our well developed Integrative Therapies program.  It provides innovative therapies such as guided imagery, comfort touch, music therapy, aromatherapy, massage, and pet therapy.  These therapies are shown to reduce agitation in residents.

If you are interested in learning more about the Integrative Therapies program at Pathways, talk to Pathways staff, or visit our website:  www.pathwayshealth.org.  The Resources section includes downloadable information and simple tips for incorporating Integrative Therapies in your daily life too!

Men, Women, and Pain

Rigorous research has concluded that men have a higher threshold for pain.  In a large-scale prospective study of 700 patients conducted by physicians from Tufts-New England Medical Center and San Ignacio Hospital, Bogata, Colombia, researchers examined post-surgical morphine use.  After adjusting for type of surgery and age, women had higher levels of pain intensity throughout the study than men, requiring an average of 30% more morphine on a per-weight basis than men to attain a similar decrease in pain intensity. 

Research results have been mixed, some finding that men required more morphine after surgery than women.  A very large Chinese study found women used significantly less morphine when using patient-controlled analgesia post-operatively, indicating that cultural, ethnic or genetic factors may account for differing research results.  But in animal models, male rats exhibited greater analgesia than female rats to equal doses of opioids.

The researchers wrote that, “Sex differences in pain perception have been attributed to a different socialization process for men and women that influences bodily experience and the willingness to communicate distress. Hormone variations could also in part explain sex differences in pain experience and response to morphine.”

Hindus & Hospice

Many Hindu beliefs align with hospice and palliative care goals.  A senior research specialist at the City of Hope in Duarte explored the Hindu concepts of suffering, karma and reincarnation in a recent article in the Journal of Hospice and Palliative Nursing.

Susan Thrane, MSN, RN, OCN, explained that among other similarities, Hindus often believe that death should neither be sought or prolonged, values that reflect the hospice philosophy.  However, they do sometimes believe that physical suffering is beneficial in that it can lead to spiritual growth, perhaps resulting in a better birth in a future life.

Although palliative and hospice care usually seeks to relieve pain and suffering, it also seeks to help individuals meet their personal goals, and sensitive to cultural beliefs.

Thrane found that Hindus tend to be family oriented, and may often defer health care decisions to the oldest son. 

There are an estimated 2.3 million Hindus in the US.