Caregiving In The Late Stages Of Alzheimers Or Dementia
As Alzheimers or another dementia reaches the late stages, your loved one will likely require 24-hour care. They may be unable to walk or handle any personal care, have difficulty eating, be vulnerable to infections, and no longer able to express their needs. Problems with incontinence, mood, hallucinations, and delirium are also very common.
In your role as caregiver, youll likely be combining these new challenges with managing painful feelings of grief and loss and making difficult end-of-life decisions. You may even be experiencing relief that your loved ones long struggle is drawing to an end, or guilt that youve somehow failed as a caregiver. As at the other stages of your caregiving journey, its important to give yourself time to adjust, grieve your losses, and gain acceptance.
Since the caregiving demands are so extensive in the later stages, it may no longer be possible for you to provide the necessary care for your loved one alone. If the patient needs total support for routine activities such as bathing, dressing, or turning, you may not be strong enough to handle them on your own. Or you may feel that youre unable to ease their pain or make them as comfortable youd like. In such cases, you may want to consider moving them to a care facility such as a nursing home, where they can receive high levels of both custodial and medical care.
Connecting in the late stages of care
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.
Cope With Changes In Communication
As your loved ones Alzheimers or dementia progresses, youll notice changes in how they communicate. They may have trouble finding words, substitute one word for another, repeat the same things over and over, or become easily confused. Increased hand gestures, losing their train of thought, and even inappropriate outbursts are all common as well.
Even if your loved one has trouble maintaining a conversationor less interest in starting oneits important to encourage social interaction. Making them feel safe rather than stressed will make communication easier, so try to manage your own frustration levels.
Be patient. If your loved one has difficulty recalling a word, for example, allow them time. Getting anxious or impatient will only inhibit their recall. Gently supply the word or tell the person that you can come back to it later.
Be aware of your body language. Your loved one responds to your facial expression, tone of voice, and nonverbal cues as much as the words you choose. Make eye contact, stay calm, and keep a relaxed, open posture.
Speak slowly and clearly. Give one direction or ask one question at a time, use short sentences, and give your loved one more time to process whats being said. Find a simpler way to say the same thing if it wasnt understood the first time.
Maintain respect. Dont use patronizing language, baby talk, or sarcasm. It can cause hurt or confusion.
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Make Time For Reflection
At each new stage of dementia, you have to alter your expectations about what your loved one is capable of. By accepting each new reality and taking time to reflect on these changes, you can better cope with the emotional loss and find greater satisfaction in your caregiving role.
Keep a daily journal to record and reflect on your experiences. By writing down your thoughts, you can mourn losses, celebrate successes, and challenge negative thought patterns that impact your mood and outlook.
Count your blessings. It may sound counterintuitive in the midst of such challenges, but keeping a daily gratitude list can help chase away the blues. It can also help you focus on what your loved one is still capable of, rather than the abilities theyve lost.
Value what is possible. In the middle stages of dementia, your loved one still has many abilities. Structure activities to invite their participation on whatever level is possible. By valuing what your loved one is able to give, you can find pleasure and satisfaction on even the toughest days.
Improve your emotional awareness. Remaining engaged, focused, and calm in the midst of such tremendous responsibility can challenge even the most capable caregivers. By developing your emotional awareness skills, however, you can relieve stress, experience positive emotions, and bring new peace and clarity to your caretaking role.
Repetitive Speech Or Actions
People with dementia will often repeat a word, statement, question, or activity over and over. While this type of behavior is usually harmless for the person with dementia, it can be annoying and stressful to caregivers. Sometimes the behavior is triggered by anxiety, boredom, fear, or environmental factors.
- Provide plenty of reassurance and comfort, both in words and in touch.
- Try distracting with a snack or activity.
- Avoid reminding them that they just asked the same question. Try ignoring the behavior or question, and instead try refocusing the person into an activity such as singing or âhelpingâ you with a chore.
- Donât discuss plans with a confused person until immediately prior to an event.
- You may want to try placing a sign on the kitchen table, such as, âDinner is at 6:30â or âLois comes home at 5:00â to remove anxiety and uncertainty about anticipated events.
- Learn to recognize certain behaviors. An agitated state or pulling at clothing, for example, could indicate a need to use the bathroom.
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Alzheimers And Driving Privileges
Driving is a complex activity that demands quick reactions, alert senses and split-second decision making. For a person with Alzheimers, driving inevitably becomes difficult. A diagnosis of Alzheimers disease does not mean the person has lost all ability to drive. Caregivers should evaluate the person regularly to determine if it is safe for him or her to drive.
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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Learn New Ways To Communicate To Reduce Arguments And Frustration
One of the most essential things to know about caring for someone with Alzheimers or dementia is that your communication methods will need to change.
Learning new ways of communicating helps both of you. Your older adult will be less likely to get angry or agitated and your life will be easier and less stressful when theyre calm.
Find out why correcting someone can backfire, how important our body language is, about a helpful way to speak, and why lying is recommended by experts.
Have Empathy And Patience
Your loved one might feel embarrassed or frustrated that they cant care for themselves the way they used to. Just as you had to come to terms with their new capabilities, so do they. Try to react with compassion and patience.
For early-stage patients: Create a help signal. Pick a cue to make sure the person you’re caring for is OK with you stepping in to help them. If they’re having trouble with a job, you might ask them if they would like you to help. But first assume that the person can complete the job on their own. Step in only when they have confirmed they need support.4
For middle-stage patients: Changes in mood and behavior are common during this stage. These shifts can be some of the most distressing for families. People with Alzheimer’s may have depression, anxiety and mood swings. They might also be prone to verbal outbursts and wandering. Knowing what behaviors to expect can help you reply with more empathy.3
For late-stage patients: It can be frustrating and upsetting when your loved one shouts at you. They may even say hurtful things. But for late-stage Alzheimers patients, shouting can be a sign that theyre in pain. So can trembling, anxiety, nervousness and sleeping issues. Try not to take those behaviors personally. Theyre not intentional.5
Connecting with other caregivers whove been where you are can help you feel better. And you can learn what helped them get through these tougher moments. To find support groups, visit the Alzheimers Association.
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Memory Care Price Ranges
Before a resident moves into a community, we work with them and their families to complete a personal service assessment. This assessment helps us design a care plan that meets that resident’s personal needs. But because your costs hinges on your particular care needs, it’s difficult to provide a final price until the personal service assessment is completed.
So while you may not have a final price, you can get an idea of other numbers based on the ranges shown below.
Consider Moving To A 55 And Older Or Retirement Community
While adding safety features in your existing home is a good option, another option to consider is moving to a community geared to older residents. While these communities may vary in cost, they often come with features that may help care for a loved one at home. Safety features such as nonslip tubs are already in place, and neighbors may have loved ones in similar situations. Many continuing-care retirement communities include areas that offer higher levels of care as a persons dementia advances. This allows a more active spouse to live independently on the same campus.
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What Is Known About Caregiving For A Person With Alzheimers Disease Or Another Form Of Dementia
People with Alzheimers disease and related dementias are usually cared for by family members or friends. The majority of people with Alzheimers disease and related dementias are receiving care in their homes. Each year, more than 16 million Americans provide more than 17 billion hours of unpaid care for family and friends with Alzheimers disease and related dementias. In 2019, these caregivers will provide an estimated 18.5 billion hours of care. Approximately two-thirds of dementia caregivers are women, about one in three caregivers is age 65 or older, and approximately one-quarter of dementia caregivers are sandwich generation caregivers, meaning that they care not only for an aging parent, but also for children under age 18.
Caregivers of people with Alzheimers and related dementias provide care for a longer duration than caregivers of people with other types of conditions . Well over half of family caregivers of people with Alzheimers and related dementias provide care for four years or more. More than six in ten Alzheimers caregivers expect to continue having care responsibilities for the next 5 years compared with less than half of caregivers of people without dementia .
The demands of caregiving can limit a caregivers ability to take care of themselves. Family caregivers of people with Alzheimers and related dementias are at greater risk for anxiety, depression, and poorer quality of life than caregivers of people with other conditions.
How To Ensure The Person Eats Well
In the later stages of Alzheimers disease, many people lose interest in food and caregivers may notice changes in how or when they eat. They may not be aware of mealtimes, know when they’ve had enough food, or remember to cook. If they are not eating enough different kinds of foods, they may not be getting the nutrients they need to stay healthy.
Here are some suggestions to help a person with late-stage Alzheimer’s eat better. Remember that these are just tipstry different things and see what works best for the person:
- Serve bigger portions at breakfast because it’s the first meal of the day.
- Offer several smaller meals throughout the day.
- Serve meals at the same time each day.
- Make the eating area quiet. Turn off the TV or radio.
- Control between-meal snacks. Lock the refrigerator door and food cabinets if necessary.
- If the person has dentures, make sure they fit. Loose dentures or dentures with bumps or cracks may cause choking or pain, making it harder to eat. Remove poorly fitting dentures until the person can get some that fit.
- Let the person’s doctor know if they lose a lot of weight, for example, if he or she loses 10 pounds in a month.
You can also try different ways of preparing the person’s plate. For example:
If the person needs help eating, you might try to:
When choosing foods to eat and liquids to drink, these suggestions might help:
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Be Prepared For Emergencies
- Keep a list of emergency phone numbers and addresses for local police and fire departments, hospitals, and poison control help lines.
- Check fire extinguishers and smoke alarms and conduct fire drills regularly.
- Enroll the person with Alzheimers disease in the Alzheimers Association Safe Return® program, a nationwide system designed to identify, locate and return to safety persons who are memory impaired.
Try Not To Get Your Feelings Hurt
As your loved ones dementia becomes more advanced, they get more confused and forgetful. That means theyll sometimes forget who you are. That doesnt mean they love you any less or forgot all the memories youve shared over the years. The older a memory is, the longer it stays with them.
I read something from the wife of a man with Alzheimers who had a wonderful way of looking at this, said Cramer. She was sitting in a car with her husband who no longer remembered her. She lovingly touched his arm. He pulled away and said Im sorry miss. You are very nice, but I love my wife. Instead of being sad, this filled his wife with joy because he still remembered her.
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Accommodate For Visual Changes
- Diffuse bright light by removing or covering mirrors and glass-top furniture, and cover windows with blinds, shades, or sheer draperies.
- Add extra lighting in entries, outside landings, areas between rooms, stairways and bathrooms because changes in levels of light can be disorienting.
- Place contrasting colored rugs in front of doors or steps to help the individual anticipate staircases and room entrances.
If You’re Struggling To Cope
Carers often find it difficult to talk about the stress involved with caring. If you feel like you’re not managing, don’t feel guilty. There’s help and support available.
You may benefit from counselling or another talking therapy, which may be available online.
Talk to your GP or, if you prefer, you can refer yourself directly to a psychological therapies service.
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Coping With Changes In Behavior And Personality
As well as changes in communication during the middle stages of dementia, troubling behavior and personality changes can also occur. These behaviors include aggressiveness, wandering, hallucinations, and eating or sleeping difficulties that can be distressing to witness and make your role as caregiver even more difficult.
Often, these behavioral issues are triggered or exacerbated by your loved ones inability to deal with stress, their frustrated attempts to communicate, or their environment. By making some simple changes, you can help ease your loved ones stress and improve their well-being, along with your own caregiving experience.
Caregiving In The Early Stages Of Alzheimers Or Dementia
In the early stages of Alzheimers disease or another type of dementia, your loved one may not need much caregiving assistance. Rather, your role initially may be to help them come to terms with their diagnosis, plan for the future, and stay as active, healthy, and engaged as possible.
Accept the diagnosis. Accepting a dementia diagnosis can be just as difficult for family members as it for the patient. Allow yourself and your loved one time to process the news, transition to the new situation, and grieve your losses. But dont let denial prevent you from seeking early intervention.
Deal with conflicting emotions. Feelings of anger, frustration, disbelief, grief, denial, and fear are common in the early stages of Alzheimers or dementiafor both the patient and you, the caregiver. Let your loved one express what theyre feeling and encourage them to continue pursuing activities that add meaning and purpose to their life. To deal with your own fears, doubts, and sadness, find others you can confide in.
Make use of available resources. There are a wealth of community and online resources to help you provide effective care on this journey. Start by finding the Alzheimers Association in your country . These organizations offer practical support, helplines, advice, and training for caregivers and their families. They can also put you in touch with local support groups.
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