Resources For Dementia Caregivers
There are many resources available to caregivers of a person diagnosed with dementia. The Alzheimer’s Association will refer you to your local chapter for information, resources, and their hands-on caregiver training workshops.
“I’ve been to our local association’s caregiver workshops and to their monthly support groups, too. Every time, when I leave, I’ve learned something — techniques, strategies, things like that — and that I’m not alone in this,” says George Robby who is caring for his wife with Alzheimer’s in their Chagrin Falls, Ohio, home.
Other good sources of information, assistance, and support include your local Area Agency on Aging and, for those caring for veterans, the Veterans Administration’s Caregiver Support Program . Some senior care companies, including Silverado Senior Living and Home Instead Senior Care, offer programs and skill-building workshops at their facilities.
Ursula Braun, MD, MPH, director, inpatient palliative care unit, Michael E. DeBakey Veterans Administration Medical Center, Houston.
Karen Hirschman, PhD, professor of social work, University of Pennsylvania School of Nursing
Jeremy M. Hirst, MD, assistant director of psychiatry programs, Institute of Palliative Medicine at San Diego Hospice, San Diego, Calif.
Greg Sachs, MD, chief of geriatrics, Indiana School of Medicine and lead researcher, IU Center for Aging Research, Indianapolis
Robert Matsuda, Los Angeles
Virtual Reality Could Reduce Loneliness A Key Risk Factor For Alzheimer’s
Older adults face an increased risk of loneliness due to a number of factors. Many live in long-term care facilities, far away from friends and family. Some may have lost a spouse, their children may have grown up and left the house, or they might have a disability or illness that keeps them homebound.
“People didn’t used to think about loneliness as a risk factor for disease,” Sekuler said. But loneliness is now comparable to heart disease or smoking in terms of its long-term health consequences, she added.
Social isolation among older adults was associated with a 50% increased risk of dementia, according to a 2020 report from the National Academies of Sciences, Engineering, and Medicine. A 2021 study from Boston University also found that persistent loneliness in mid-life made people more likely to develop dementia and Alzheimer’s later on.
The pandemic has worsened the problem: More than one-third of Americans in a Harvard University survey reported “serious loneliness” as of October 2020, meaning they were frequently, usually, or always lonely in the prior four weeks.
Sekuler said the world could see a “doubling down” of neurodegeneration as a result of COVID-19.
Take Care Of Legal Matters
Help for early dementia will also look like getting legal matters under control.
Unfortunately, there will most likely come a day when your loved one cant act on their own behalf or make decisions. Taking care of legal matters while your loved one is still in good mental health will ensure they:
- Getting power of attorney for your loved one
- Collecting important documents, like social security cards, birth certificates, etc.
- Having your parents make a will
It can be helpful to talk to an elder law attorney to ensure that you dont leave any stone unturned in regards to your parents legal matters.
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Communicating With Friends And Relatives
- Provide information about dementia to friends and relatives. Useful material is available from Dementia Australia and much of it is written in community languages as well as English.
- Explain that although a person with dementia may look or appear fine, they have an illness that is devastating, but not contagious.
- Accept that some friends may drift away.
- Ask visitors to come for short visits.
- Do not have too many visitors at one time.
- Suggest that family and relatives who visit come prepared for activities, such as bringing a snack, going for a walk, bringing a simple project to do together or looking at a photo album.
- Prepare visitors for problems with communication and suggest ways that they might deal with these.
How You Can Help
Let the person help with everyday tasks, such as:
These can lead to increased confusion and make the symptoms of dementia worse.
Common food-related problems include:
- forgetting what food and drink they like
- refusing or spitting out food
- asking for strange food combinations
These behaviours can be due to a range of reasons, such as confusion, pain in the mouth caused by sore gums or ill-fitting dentures, or swallowing problems .
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Strategies For Dealing With Alzheimers
Sometimes prescription drugs can be helpful in treating these behavioral changes. There are medications for anger management, depression and anxiety. Non-drug therapies have also proven to be successful in mitigating and managing behavior issues associated with Alzheimers.
Caregivers cant do much to prevent Alzheimers-related changes in personality and behavior, but there are ways to cope. Try the following strategies:
Things To Do After Dealing With Aggressive Behavior In Dementia
1. Learn from what happenedAfter giving yourself a chance to calm down and de-stress from the episode of aggressive dementia behavior, take a step back to see what you can learn from the situation.
Analyzing the situation also helps you take it a little less personally and makes it easier to think about what you could do differently next time to try to avoid an aggressive reaction.
Think about possible triggers, which responses helped calm things down, and which responses seemed to make the situation worse.
It often helps to take notes on your observations to see if you can spot patterns or figure out new ways to try to prevent a similar outburst in the future or cool things down if it does happen.
2. Find sources of supportIts essential for your well-being to talk with people who understand and can help you cope with these tough situations and deal with the conflicting emotions.
Getting your feelings out is an important outlet for stress. Plus, you might get additional tips and ideas for managing aggressive dementia behavior from others who have dealt with it.
3. Consider medicationWhen non-drug techniques arent working and challenging behaviors become too much to safely handle, it might be time to work with their doctor to carefully experiment with behavioral medications.
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Helping Someone With Everyday Tasks
In the early stages of dementia, many people are able to enjoy life in the same way as before their diagnosis.
But as symptoms get worse, the person may feel anxious, stressed and scared at not being able to remember things, follow conversations or concentrate.
It’s important to support the person to maintain skills, abilities and an active social life. This can also help how they feel about themselves.
Dont Say No Dont Or Cant
One of the biggest mistakes in dealing with patients and/or loved ones with memory loss is being negative and telling them that they cant do something. Words like no,” don’t, or can’t create resistance. This comes up regularly with family members when the patient and/or loved one might be still driving, and the caregiver and/or family member has made the decision to stop them from driving. One should never say, You can’t drive anymore. They can still technically drive , and they can get very combative when told no. A way to counter this is to say, I know you still can drive, that’s not even a question, but you know what happened the other day? I was out on the highway and this car cut me off, and I had to make a split-second decision it was really scary Its likely they will say, You know what? I’m having a little trouble with those decisions too. The issue isn’t the mechanical driving, it has more to do with comprehension, and many times this answer works much better than, You can’t drive anymore, which can be construed as confrontational.
You may find a patient and/or loved one up too early or confused about time. Instead of using messages such as, Youre up too early, you need to go to bed, try leading with statements such as, You know, I’m getting sleepy. Id like a little snack before I go to bed, and then gesture for the patient and/or loved one to sit with you.
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Dont Use Slang Or Figures Of Speech
As dementia progresses, it can become harder for someone to understand what youre trying to tell them. For example, telling a loved one with Alzheimers disease that its “no use crying over spilled milk” might result in him looking to see where the milk has spilled, rather than end up comforting him or encouraging him not to focus on a past problem.
In fact, the proverb interpretation test, which asks the test taker to interpret abstract ideas such as the spilled milk reference above, is one way to screen for symptoms of dementia.
Develop Helpful Daily Routines
Having general daily routines and activities can provide a sense of consistency for an Alzheimers or dementia patient and help ease the demands of caregiving. Of course, as your loved ones ability to handle tasks deteriorates, youll need to update and revise these routines.
Keep a sense of structure and familiarity. Try to keep consistent daily times for activities such as waking up, mealtimes, dressing, receiving visitors, and bedtime. Keeping these things at the same time and place can help orientate the person with dementia. Use cues to establish the different times of dayopening the curtains in the morning, for example, or playing soothing music at night to indicate bedtime.
Involve your loved one in daily activities as much as theyre able. For example, they may not be able to tie their shoes, but may be able to put clothes in the hamper. Clipping plants in the yard may not be safe, but they may be able to weed, plant, or water.
Vary activities to stimulate different sensessight, smell, hearing, and touchand movement. For example, you can try singing songs, telling stories, dancing, walking, or tactile activities such as painting, gardening, or playing with pets.
Spend time outdoors. Going for a drive, visiting a park, or taking a short walk can be very therapeutic. Even just sitting outside can be relaxing.
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From Nursing Doors To My Dad: When Dementia Became Personal
My personal experience in taking care of my dad with dementia was challenging. I was a caregiver who had to teach my mom how to interact and communicate with him. My mom still considered him to be her loving husband of 40 years, not acknowledging that his environment had changed. I also found myself talking to him as if he was the same dad Id known for 47 years. I know we all tend to forget things on a day-to-day basis, but what changed for my dad is when that forgetfulness was on a continuum with no remembrance of what was misplaced.
This behavior increased and thus warranted an evaluation for him to be diagnosed. Of course, the first reaction was denial from both of my parents. Then came reality as time progressed. I saw the distress behaviors when he was asked multiple questions at once and how my mom was doing everything for him, such as bathing, combing his hair, feeding him, etc. When I approached my mom, the conversation was about allowing him to do as much as he can for himself to avoid becoming so dependent.
Moving forward, we both saw the need for appropriate communication and how to modify those distress behaviors to produce positive health care outcomes. Although my dad is no longer with us, he has set the stage to teach, engage, and inspire health care providers to communicate and interact with people with dementia.
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Decide On Future Financial And Medical Plans With The Patient
It is important to get clarity on how to cope as time progresses and the dementia worsens. You should have clear plans worked out on who will manage the banking and financial affairs of the individual. Share your number with the utility company, informing them of the condition of your loved one, so that power supply or heating isnt cut off if they forget to pay their bills. Also do the difficult task of discussing which medical treatments they would prefer not to be subjected to, should the need arise at a future date.15 This legal document is known as an advance care directive and details what health decisions can be made on their behalf if they are no longer capable of doing so.16
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Coping With Feelings As A Carer Of Someone With Dementia
- Feel the pain â allow yourself to really feel what you are feeling. Denying the feelings only intensifies and prolongs the pain.
- Cry â tears can be therapeutic.
- Talk â share the pain to help diminish grief. It can be helpful to talk to a person outside the family, such as a counsellor.
- Keep a journal â a private place where anything can be written, including unfulfilled wishes, guilt, anger or other thoughts and feelings.
- Let go. Try not to be engulfed by bitterness.
- Find comfort. Different people have different ways to find comfort, including using rituals like prayer, meditation or other activities.
- Hold off on decisions. Tread carefully before making decisions and thoroughly explore all options before you take any major steps.
- Be kind to yourself, be patient with your feelings, and find a balance between the happy and sad person, the angry and peaceful, the guilty and glad.
- Learn to laugh again and rediscover your sense of humour. Finding joy in life can be one way to honour the happy times that you used to share with the person you are caring for.
Other Factors That Can Affect Behavior
In addition to changes in the brain, other things may affect how people with Alzheimers behave:
- Feelings such as sadness, fear, stress, confusion, or anxiety
- Health-related problems, including illness, pain, new medications, or lack of sleep
- Other physical issues like infections, constipation, hunger or thirst, or problems seeing or hearing
Other problems in their surroundings may affect behavior for a person with Alzheimers disease. Too much noise, such as TV, radio, or many people talking at once can cause frustration and confusion. Stepping from one type of flooring to another or the way the floor looks may make the person think he or she needs to take a step down. Mirrors may make them think that a mirror image is another person in the room. For tips on creating an Alzheimers-safe home, visit Home Safety and Alzheimers Disease.
If you dont know what is causing the problem, call the doctor. It could be caused by a physical or medical issue.
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How To Deal With Dementia In A Parent
When the loved one with dementia is your parent, it can be especially challenging. The person who once cared for your every need now needs you to do the same for them.
If you are facing a dementia diagnosis with a parent, know that youre not alone. There are things you can do to help cope with this new reality.
Do Not Try And Alter Undesirable Behavior
Lack of understanding may push one to try and change or stop any undesirable behavior from patients who have dementia. Keep in mind that it is almost impossible to teach new skills or even reason with the patient. Try instead to decrease frequency or intensity of the behavior. For instance, respond to emotion and not the changes in behavior. If a patient insists on always asking about a particular family member reassure them that he or she is safe and healthy as a way of keeping them calm and happy.
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What Causes These Behavioral Changes In Those With Alzheimers
These difficult behaviors are what doctors call noncognitive neuropsychiatric symptoms . They are a result of damaged brain cells, caused by dementia and Alzheimers. Not surprisingly, an impaired brain loses its ability to function properly. As a result, it can dramatically change how a person will act.
Physiological changes caused by the disease are primarily what trigger shifts in behavior. However, disturbing behavior can also be caused by certain environmental conditions. These can aggravate and complicate the situation for a person with Alzheimers. Examples include:
- A noisy restaurant
- A large party where everyone is talking at once
- A loud television
All of these situations can make it more difficult for someone to cope with the changes going on in their brain. Behavioral difficulties may also be a result of true physical discomfort and someone with Alzheimers may not be able to communicate this. Make sure their anger and anxiety arent stemming from bad arthritis, constipation, cramps or some other physical pain. Make sure their clothes arent bothering them and that they arent too hot or too cold.
Wondering how to support a loved ones goal of being able to age at home? Were here to help. Whether its for one month or ten years, our caregivers can help your loved one live the life they want at home. Call a Care Advisor today at or and learn more about how we can support your needs.