In This Issue
Making a Difference Through Visiting
Nearing the End of Life When Someone has Dementia
Spotlight on Current Research: Sense of Smell
Caregiving Tips: Hallucinations
Upcoming Support Groups
Making a Difference Through Visiting
Visiting someone with dementia can be difficult, especially as the disease progresses and the abilities of the person with dementia change. It is important to continue visiting, even if it feels uncomfortable and you don’t always know what to do or say.
“The behaviour of a person with dementia often changes after they’ve had a visitor, even if they don’t remember them. They become happier, calmer,” says Cindy Greenlay, who has been caring for people with dementia in long term care facilities for over 25 years.
It is important to figure out what will make the visits more enjoyable for you. There isn’t one recipe that is right for everyone. Keep trying different things until you find what works. Preparing ahead can be helpful.
“It’s hard when there is limited interaction, so it’s important to keep yourself motivated to come back,” says Cindy, Manager of Therapeutic Recreation and Support Services at the Saul & Claribel Simkin Centre. “It can be as easy as bringing a newspaper. Discussing the articles can keep the visitor talking. Even if the person does not respond, they have gained comfort from your voice.”
Looking at photo albums can also be a great way to spend time together. Try not to make the person remember specific names and experiences. Instead, show them the photos and use their cues to discuss memories as they are triggered.
“Families often long for their family member to remember them, but this can be stressful for a person with dementia,” says Cindy. “Think of how you feel when you run into someone you know but forget their name. It is embarrassing and stressful. This is how they feel when you insist that they remember.”
It may not seem like they know you are there, but your visit definitely makes a difference and improves the person’s quality of life. If you adjust your expectations of the visit, you will find that the time you spend together will be more enjoyable.
“Try to focus on the positive and what the person can still do,” suggests Cindy. “When someone asks about your visit you can say, ‘Wow. Mom grabbed my hand today, it was pretty amazing.’ Rather than, ‘Mom couldn’t even talk today, all she could do was grab my hand.’”
Don’t forget to give yourself permission to be human. You have good and bad days, too. If you need to shorten, or even skip a visit from time to time to replenish yourself – that’s OK. Maybe another family member or friend can visit in your absence.
You can hear Cindy speak about this topic at the Alzheimer Society’s free family education seminar on Wednesday, November 19 from 7 to 8:30 pm at the Parkway Retirement Community, 85 Paget Street. Visit alzheimer.mb.ca for more information or to register online today.
When a family member or friend is nearing the end of life, many people are unsure about what to expect and what they can do to help. When a person has dementia, the situation may be even more difficult because of the individual’s inability to communicate or respond effectively.
“While palliative care is appropriate from the time of diagnosis, the WRHA Palliative Care Program will accept people who are considered to have six months or less to live,” explains Sarah Brown, Clinical Nurse Specialist at both the Canadian Virtual Hospice and at the Winnipeg Regional Health Authority’s Palliative Care Program. “Because of the way dementia progresses, it’s difficult to predict when a person is nearing the end of life.”
Sarah explains that for someone with dementia, it is important to watch for signs that end of life is approaching. Is mobility becoming limited? Does the person seem to be getting weaker, requiring chair to bed transfers when transfers were not needed before? Is appetite decreasing so that the person is eating less and less every day?
“With dementia, a person can be physically healthy for a long time, so when there are significant changes to mobility and appetite, it suggests the person is nearing the end of life,” explains Sarah.
Many caregivers worry about their family member being in pain and being unable to tell anyone. Sarah admits that this is a real concern, but watching for non-verbal signs of pain can help. For example, grimacing or guarding the body may indicate that pain is present. Caregivers should also consider what their family members were like before the cognitive problems worsened. If they talked about arthritis pain while rubbing their hands, it’s likely the same physical action is an indication of pain even if they can’t talk about it anymore.
Swallowing problems are common with all people as they near death and may be evident in someone with dementia at earlier stages. For these individuals, the complex interactions in the brain and body that signal the need to swallow could become severely compromised as the disease progresses. Lung infections, caused when food and fluids – including saliva – enter the lungs, occur because the person is unable to cough and clear the food and fluids.
Providing food to a person with swallowing problems can be done by what Sarah calls ‘careful hand feeding,’ which lets the person taste the food and interact with caregivers. There comes a time, however, when the person will not want to eat at all.
“Not wanting to eat is normal for someone who is dying; lack of appetite is a natural progression towards the end of life,” says Sarah. “This can be difficult for family, but as the body systems shut down it is common to reject food and fluids.”
When death is imminent, keeping the person comfortable by ensuring medication is administered in a practical way (such as via a nasal spray, under the tongue, or a patch), providing mouth care to fend off dryness and giving gentle massages to loosen up muscles and tendons can be a great comfort.
Sarah has one last, important piece of advice: “Continue to talk to the person, even if they don’t talk back … they’ll always hear you, though they may not understand. Your presence will be a comfort.”
Spotlight on Current Research:
Loss of Smell May Be Linked to Cognitive Decline and Dementia
Two studies have associated the decreased ability to identify odors with loss of brain function and the progression to Alzheimer’s disease. Both studies administered the 40-item University of Pennsylvania Smell Identification Test (UPSIT).
In one study, researchers from Harvard Medical School administered a smell test and other cognitive tests to 215 healthy older people. They also measured the size of two brain structures that are important for memory – the hippocampus and the entorhinal cortex. Results show that a smaller hippocampus and entorhinal cortex were associated with poorer
smell identification and poorer memory.
In a separate study, researchers from Columbia University Medical Centre investigated 1,037 older people without dementia. The participants were assessed in a variety of ways three times between 2004 and 2010, with the smell test being administered between 2004 and 2006. In the 757 participants who were followed, lower scores on the smell test were significantly associated with the transition to dementia and Alzheimer’s disease. Results further showed that, for each point lower that a person scored on the smell test, the risk for Alzheimer’s increased by about 10%.
Both studies seem to show potential to detect Alzheimer’s disease early through the association of loss of smell to cognitive decline. The ability to smell, associated with the first cranial nerve, is often one of the first things to be affected by cognitive decline. Because many conditions can also interfere with the sense of smell, including aging, more follow up research is needed to prove specificity, effectivity and reliability of the tests performed.
Click here for further information.
Individuals with dementia may experience hallucinations due to the changes in the brain, certain medications or other coexisting illnesses. Hallucinations are a sensory experience of something that is not really present. People may see, hear, smell, feel or taste something that isn’t really there; this can either cause positive or negative emotions.
It is important for caregivers to understand that the person is not reacting intentionally, but could be responding to what they are seeing or hearing.
When hallucinations occur, inform the person’s doctor. Describe the situation in detail, including the surrounding circumstances prior to and after the episode of hallucination. The doctor may prescribe medications. Some medications may help but may also have various side effects.
The following are helpful ways of approaching situations when a person with dementia is experiencing hallucinations:
- Acknowledge what the person is experiencing; it could be fear, discomfort, anger, feeling unsafe or joy.
- Explain to the person what’s happening if he or she is able to understand the situation.
- Do not argue. What they are sensing is very real to them.
- Reassure the person with calm, kind words and a gentle touch. This may help turn the person’s attention towards you. Stay with the person until he or she feels at ease and safe.
- Use distraction. Suggest going for a walk or going to another room for a snack or an activity. Engage the person in an enjoyable activity to help redirect attention.
- Check the environment. Improve lighting, eliminate shadows and try not to change how things are arranged to minimize confusion. Reduce stimulation.
- Keep a diary. Keep track of what, when and where hallucinations take place. This information can help doctors assess the situation. Analyzing the circumstances can also help you understand the situation and how to approach the person.
- Ask your pharmacist for a medication review. Certain medications or medication interactions may cause hallucinations. Do not discontinue medications unless suggested by the doctor.
A person with dementia may have varying reactions to the hallucination; some may become upset and frightened while others may not. It is important to recognize how the hallucination impacts the person’s behaviour, abilities and safety. Being supportive will help the person with dementia feel safe and minimize distress for both of you.
Maximizing Opportunities to Share Quality Time Together
Wednesday, November 19, 7 to 8:30 pm
The Parkway Retirement Community, 85 Paget Street, Winnipeg (map)
For more information, call 204-943-6622 ext. 203
Click here to register.
Living with Alzheimer’s Disease or Other Dementias (Workshop)
These one or two day workshops provide valuable information for those who are caring
for a person with dementia.
Saturday, November 22, 9 am to 4 pm
4th Floor Assiniboine Centre, 150 McTavish Avenue, Brandon (map)
Click here for more information.
Saturdays, January 31 and February 7, 9 am to 2 pm
Seine River Retirement Residence
3035-1015 St. Anne’s Road, Winnipeg (map)
For more information, call 204-943-6622 ext. 203
Online registration coming soon!
This is an eight-week classroom program uniting families and community members with
individuals who are experiencing the early stages of dementia.
Wednesdays, February 18 to April 8, 10 to 11:30 am
Alzheimer Society Provincial Office, 10-120 Donald Street, Winnipeg (map)
Click here for more information or contact the Client Services Coordinator at 204-943-6622, ext. 229
The Dementia Care conference is a two day learning opportunity for healthcare professionals caring for people with dementia.
Monday & Tuesday, March 9 & 10, 2015
Canad Inns Polo Park, 1405 St. Matthews Avenue, Winnipeg (map)
More information to come soon!
Upcoming Support Groups
Grand Opening of the South Eastman Office
Join Alzheimer Society of Manitoba staff as they cut the ribbon on the new South Eastman Office. You’ll hear about the programs and services offered over coffee and conversation.
Thursday, November 13, 2 to 4 pm
9A-90 Brandt Street, Steinbach (map)
Call Leona Doerksen at 204-326-5771 for more information.
Tree of Memories Ceremony
Our Tree of Memories is a beautiful bronze sculpture displayed in the foyer of our provincial office at 10-120 Donald Street in Winnipeg (map). Each engraved brass leaf on the tree serves to honour the memory of people who were affected by Alzheimer’s disease or another dementia.
The Alzheimer Society’s next Tree of Memories ceremony takes place on Wednesday, November 26. Purchase an engraved commemorative leaf to place on the Tree of Memories to honour the memory of your loved one.
Call 204-943-6622 or click here for more information.
January is Alzheimer Awareness Month!
The Alzheimer Society is looking for volunteers to knock on doors and request donations this January during Alzheimer Awareness Month.
If you can spare an hour or two canvassing a street in your neighbourhood, please register here or call 1-800-378-6699 for more information.
Get Ready for A Night to Remember in Brazil!
Don’t miss the Alzheimer Society’s Annual Gala! Join guest speaker Dawna Friesen, anchor and executive editor of Global National, for appetizers, dinner, entertainment and live and silent auctions.
Thursday, February 12, 2015, 6 pm
RBC Convention Centre, 375 York Avenue, Winnipeg (map)
Click here for for more information and to purchase tickets.