Dementia is an umbrella term referring to a diminished mental capacity that is serious enough to interfere with daily life. It includes Alzheimer’s, a specific disease that is the most common form of dementia.
Knowing more about dementia can help those who have been diagnosed. It can also give their loved ones valuable insight into making the best of what can be challenging circumstances.
Jeannie Thompson is the manager of assisted living at Sanford Health’s WoodsEdge senior living campus in Bemidji, Minnesota. She is a licensed social worker and licensed assisted living director who oversees the Windsong assisted living and Trillium memory care residences at WoodsEdge.
Thompson graduated from college thinking she was going to work with children. When a clinical position was not immediately available, she worked at a nursing home thinking she would put her time in while waiting for an opening better suited for her career aspirations.
Two weeks into it, Thompson realized this was what she should be doing.
“These are my people,” she remembers thinking at the time. “I’ve now been in long-term care, assisted living and memory care for more than 30 years.”
Those decades have been filled with providing for those in need of assisted living and memory care and helping their families navigate the obstacles that come with this disease.
“The biggest draw for me is that the residents are wonderful,” Thompson said. “I also love knowing that I can make a difference for the family members. Our team here can make a difference. We can allow the family members to go back to seeing their loved one as a husband, wife or father or a mother – not just someone they feel obligated to constantly care for.”
Thompson shared her expertise in caring for those with dementia and provided important insight into the impact it has on patients and their families.
What is the behavior of a person with dementia?
In general, dementia can involve any of these symptoms:
- Confusion: They may be confused about who they are, where they are, or what they are doing.
- Restlessness: They may pace, fidget, or wander.
- Aggression: They may react aggressively if they feel threatened or are in pain.
- Hallucinations: They may see, hear, smell, taste, or feel things that aren’t there.
- Repetition: They may repeat certain behaviors or gestures.
- Sundowning: They may become more confused and agitated in the late afternoon or early evening.
- Sleep disturbances: They may get up repeatedly during the night.
- Resistance to bathing: They may struggle with bathing due to privacy concerns.
Other behaviors include:
- Anxiety or fear
- Depression
- Hiding things
- Suspicion of others
- Difficulty sleeping
- Misunderstanding what they see or hear
“In most instances, dementia starts with issues with remembering,” Thompson said. “There’s a lot of forgetfulness that happens. We forget appointments, we forget events, we forget to put things on our calendar. We forget what we did and what we didn’t do.”
As the disease advances, withdrawal can become a symptom. Individuals are no longer able to process information at the speed that it comes in. They are being asked to function in a world that is moving too fast.
“You can no longer think as logically as you once could,” Thompson said. “You don’t have the same kind of insight and judgment. We may also see a lot of fear and anxiety because they can no longer put things in perspective.”
How does dementia affect a person physically?
People with dementia may gradually deal with significant physical decline, including:
- Losing the ability to walk or stand
- Incontinence
- Eating and swallowing
- Decline in the immune system
- Pain caused by lack of mobility
“Our brain is our hub for our physical body and parts of it are dying,” Thompson said. “Eventually dementia will take your life if another coexisting condition doesn’t do it first.”
How do you care for people with dementia?
Contented Dementia Trust, a charitable organization centered on promoting quality of life for those diagnosed with dementia, has created three “golden rules” that are often cited by dementia caregivers:
- Don’t ask direct questions.
- Listen to the expert – the person with dementia – and learn from them.
- Don’t contradict.
As Thompson explained:
“You should not challenge their memory,” she said. “You should not greet them with, ‘Who am I? Do you remember me?’ We want to encourage conversation but not challenge them.”
If you’re hoping to talk about a memory you share with the patient, provide context first.
“Start it with ‘I was thinking about when we went to Chicago on that trip and the things we did,’” Thompson said. “It helps go back to that point without asking, ‘Do you remember where we went in 1982?’”
It is essential to not put the person in a position where they are going to struggle to come up with an answer to a question. It is important not to criticize their efforts to perform everyday tasks. Providing support – whether that means helping them put on their socks correctly or establishing a consistently encouraging presence – can mean a lot.
“You want to reassure them that they are OK,” Thompson said. “We acknowledge there are challenges and, yes, we’re going to deal with them. But we’re going to get through them together. We don’t want to make them feel like they have to figure it out themselves.”
What is the life expectancy for someone with early-onset Alzheimer’s?
Early-onset Alzheimer’s is rare – of the 6.5 million people in the U.S. with Alzheimer’s, about 5% are diagnosed before the age of 65.
Because it’s so rare, providing a definitive prognosis is difficult. In general, people with Alzheimer’s live for an average of eight years after their symptoms appear. But the disease can progress quickly in some people and slowly in others. Some people live as long as 20 years with the disease.
Accurate prognosis is further complicated because many Alzheimer’s patients – both younger and older – do not know when they began dealing with the disease.
“By the time you get diagnosed, a lot of times it’s other people in your world who have figured it out first,” Thompson said. “Often by the time you’re diagnosed, you’re already three or four years into the process.”
What are symptoms of the final stages of dementia?
The final stages of Alzheimer’s and other kinds of dementia may include:
- Loss of many physical abilities, including walking, sitting, eating
- Loss of bowel and bladder control
- May be able to say some words or phrases but not have a conversation
- May need help with all activities
- More likely to get infections, especially pneumonia
“There’s a lot of reverse aging that goes on,” Thompson said. “You can think of it as a bell curve. When we’re first born, we’re bedridden and we are dependent on someone to take care of our every need. Because we can’t talk, we can’t verbalize, we don’t have muscle control. We don’t have bladder and bowel control. But our brain is learning along the way and we’re growing through that process.”
If you have dementia, however, you hit those same milestones as you would growing up – with the difference being that your ability to learn declines.
“There can still be moments of happiness and excitement, and it’s our job to foster that,” Thompson said. “It’s our job to find that and help them when they can’t do it for themselves.”
How long does an aggressive stage of dementia last?
This aggressive “stage” really isn’t a stage at all. It is a reaction to the disease and how the brain deals with it. How long it lasts can be affected by a specific dementia diagnosis and by individual circumstances.
“Usually toward the later stages we see a lot of the aggression go away,” Thompson said. “As caregivers, we often talk about the fact that residents need to move through a stage to get to a better place. It could sound like you’re wanting them to decline, but the place they’re at is so difficult and challenging for them. It’s so fearful and tense for them. We want them to get to a place where they have less of that. Sometimes that means moving further into the disease process.”
How do you avoid getting frustrated as a caregiver?
“Take a deep breath,” Thompson advised. “Trying to rush things along will not get you anywhere. If you have dementia, you can only go the speed you can go. As a caregiver you have to be prepared for that.”
What can you do to make potentially challenging day-to-day circumstances easier on the caregiver and the person challenged by dementia?
Maintain eye contact when entering a room. Build a rapport. Stay calm.
These tips can help a caregiver, especially when the person being cared for is reluctant to do something – take a bath, get out of a chair, etc. – that is ultimately in their best interest.
“It can help to be encouraging,” Thompson said. “We will say, ‘Come on, it’s time to do this,’ instead of ‘Do you want to…?’ If they’re being honest like most of us, they will tell us they don’t want to do whatever it is we’re asking them to do. So we try to be encouraging about things they can look forward to that day.”
That can sometimes be more difficult for family members who have long histories with the person they’re caring for. The key is to leave the baggage behind. If clashes were common with Dad back in the day, it’s time to ignore that history and proceed.
“You have to leave that at the door,” Thompson said. “They are who they are today. And if they could be different, they probably would.”
What is it like to work in memory care?
At the residences Thompson manages, she and her colleagues strive to create a community environment. When residents leave their apartment, they enter a space that includes activities, events and a reassuring staff.
“It feels very homelike,” Thompson said. “Our families are welcome to join us. If they need to spend the night with their resident, for whatever reason, we make that happen because it is about putting the resident first. I think between our passionate staff, our environment, and our commitment to our families, we really do a great job in taking care of the residents.”
Thompson’s mother talked about her daughter’s caregiving nature when she was a child. It’s a personality trait that has never left her. The same can be said for her colleagues.
“I see passion, I see caring, and I see love from our staff to our residents,” Thompson said. “The team we have here is phenomenal. We challenge each other and we support each other. That makes us all better for the residents and their families. I can’t imagine working with anyone else.”
Where do I go for support?
Being diagnosed with dementia can be scary, but remember you aren’t alone. There are many resources to help you navigate your future or the future of a loved one:
- The Alzheimer’s Association can connect you with phone support, local resources and support groups, education programs, and online tools.
- Geriatric medicine experts at Sanford Health diagnose, treat and manage Alzheimer’s and other forms of dementia.
- Good Samaritan Society special care units for dementia and memory care provide personalized programs that enrich the mind, body and spirit with love and compassion.
Learn more
- Alzheimer’s disease challenges patients, families
- How do you talk to someone who has Alzheimer’s?
- It’s not always Alzheimer’s
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Posted In Healthy Living, Senior Services, Specialty Care
