Wednesday, March 27, 2024
HomeAlzheimerCaring For Person With Alzheimer's Disease

Caring For Person With Alzheimer’s Disease

Providing Optimal Dementia Support To Indigenous People In North America

Caregiver Training: Refusal to Take Medication | UCLA Alzheimer’s and Dementia Care Program

In this exercept from the essay ‘Providing optimal dementia support to Indigenous people in North America’, from the World Alzheimer Report 2022, Jordan P Lewis and Kristen M Jacklin write about the need for culturally tailored dementia care in Indigenous communities in North America.

This years World Alzheimer Report centres around the global landscape of post-diagnosis support and consists of case studies, shared experiences and expert essays, including Providing optimal dementia support to Indigenous people in North America from Jordan P Lewis and Kristen M Jacklin of the Memory Keepers Medical Discover Team .

Following the publication of the World Alzheimer Report on 21 September, we are highlighting a selection of essays, with included additional introductions from the authors.

Kristen writes: The western biomedical viewpoint on dementia has dominated the dementia dialogue for more than a century. In recent decades, efforts have been placed on the development of diagnosis and care models that privilege populations whose beliefs and understandings align with this biomedical illness construction.

For us, inclusivity is not merely participation in biomedical clinical trials and interventions. It involves acknowledgement and inclusion of Indigenous ways of knowing and ways of doing.

Providing optimal dementia support to Indigenous people in North America
The need for culturally safe and fair dementia care

This is viewed as a spiritual journey that requires respect.

Recognize When Alzheimers Patients Need A Higher Level Of Care

In later stages of the disease, caring for an Alzheimers patient at home often becomes too demanding, dangerous and expensive. Family caregivers must respect their personal limits, recognize serious changes in their loved ones condition, and learn about alternative Alzheimers care options that may be more appropriate as daily needs increase.

The Three Stages Of Dementia

After dementia is diagnosed, it usually follows a three-stage, downward trajectory.

In mild dementia, people may have difficulty remembering words and names, learning and remembering new information, and planning and managing complicated activities such as driving. They may also be experiencing sadness, anxiety, loss of interest in once pleasurable activities, and other symptoms of major depression.

In moderate dementia, judgment, physical function, and sensory processing are typically affected. This can cause problems with personal hygiene, inappropriate language, and wandering. This stage — when your loved one is able to get around but has poor judgment — is physically and emotionally challenging for the caregiver.

“My dad went from being Mr. Nice Guy to Mr. Obsessed. And things were always worse at night. He was energized and I was physically exhausted,” says Robert Matsuda, a Los Angeles musician who worked full-time and cared for his father with Alzheimer’s Disease for three years before recently placing him in a nursing home.

As a patient moves from mild to moderate dementia, some home modifications that may include removal of throw rugs, installation of locks and safety latches, and the addition of a commode in the bedroom often need to be made.

This is also the time when the palliative care team should be brought in to support the caregiver and help manage behaviors.

Read Also: How Is Frontotemporal Dementia Different From Alzheimer’s

Kristen Osterhoudt Alzheimers Disease Caregiver Support Initiative

Often caregivers will wait until they are totally burnt out to ask for help.

Support groups can be incredibly helpful. By joining or chatting with a community of others going through same experience, you’ll learn more about not only the symptoms and progression of the disease, but also insight into coping with more challenging behaviors.

Assembling a strong care team and/or using respite services can reduce the burden of caregiving on a single individual. Kristen Osterhoudt, regional coordinator for education and training services for the Alzheimers Disease Caregiver Support Initiative suggests making a list of needs, like planning doctor appointments, medication management, household chores, grocery runs and meal prep, then divvying up those tasks among the team.

“Often caregivers will wait until they are totally burnt out to ask for help,” Osterhoudt says. “Don’t wait. Reach out and get the help you need to take care of yourself and the individual.”

It’s easy to take on too much when it comes to our loved ones, but boundaries are important. While the person’s health and safety may feel like your top priority, it’s important to keep in mind that they’re not the only ones that need, and deserve, care.

Resources For Caregivers Of People With Alzheimers Disease And Related Dementias

Living with Alzheimer?s Disease : A Complete Guide to Caring for ...

When a family member or loved one has Alzheimers disease or a related dementia, you may find yourself left with more questions than answers. These diseases change the way a person thinks and acts, and can be very challenging, especially for those in a caretaking role. Learning more about these diseases, what to expect, and what you can do can make a difference in a caregivers health and well-being and the well-being of the person youre caring for.

The federal government offers reliable resources on Alzheimers disease and related dementias and can connect you to important information about care and support. You can use the pages on this website and resources below to find more information from government sources. The information provided on these websites has been reviewed by experts in their fields. Health care providers, case managers, social workers, and nonprofit organizations may also be helpful.

Don’t Miss: What Color Ribbon For Alzheimer’s

Understand And Accept Your Loved Ones Dementia Diagnosis

A dementia diagnosis is difficult on both the patient and their loved ones. For many, a diagnosis is the beginning of a long and uncertain journey. The road ahead could be difficult, but there are resources and education that can help, says Suzanne Havrilla, D.P.T., director of home support with Johns Hopkins Home Care Group.

Many families begin their path to acceptance by learning more from Alzheimer’s support organizations. These organizations often hold support groups for patients and families affected by dementia. They can also connect families to area practitioners and information. Its important to reassure families that patients can have a very good quality of life with this diagnosis, explains Havrilla. Once they are accepting of that, it may be easier for the caregivers.

Living At Home With Dementia

As Canadas population ages and chronic disease rates increase, federal, provincial and territorial governments are recognizing the need to make home care more available and accessible. About 61% of seniors in Canada with dementia live outside of long-term care or nursing homes: 69% of those younger than 80 and 58% of those 80 and older. A Common Statement of Principles on Shared Health Priorities is a recent agreement between the federal, provincial and territorial governments to provide substantial federal investment over 10 years, in part, to improving access to health care and support services at home and in the community.

Recommended Reading: Can You Forget You Have Alzheimer’s

Seniors With Dementia Living At Home Have Complex Care Needs

Seniors with dementia who receive care at home may present more challenges than those without dementia because they are more clinically complex. Some of the characteristics of these individuals include the following:

  • 1 in 5 have severe cognitive impairment
  • 1 in 4 require extensive assistance or are dependent for activities of daily living
  • 1 in 4 exhibit any responsive behaviours
  • 1 in 4 have signs of depression

Seniors with dementia who live at home score worse on behavioural and cognitive scales compared with other seniors living at home and receiving care. Seniors with dementia exhibit responsive behaviours such as verbal and physical abuse, socially inappropriate behaviour and resisting care more frequently than those without dementia . However, among all seniors with dementia receiving home care, a larger proportion do not exhibit any responsive behaviours than do . Seniors with dementia score the same in health instability and are admitted to hospitals less frequently. The CHESS Scale detects health instability and is designed to identify individuals at risk of serious decline.

Coping Strategies For Alzheimer’s Disease Caregivers

Caregiver Training: Repetitive Questions | UCLA Alzheimer’s and Dementia Care Program

If you are a caregiver for someone suffering from Alzheimer’s disease , you may face difficult challenges as you try to provide care and understand the behavior changes of the person you are caring for. Understanding the behavior of a person with AD can help lessen these difficulties.

People with AD may exhibit the following behaviors:

  • Extreme anxiety about daily life, which may be exhibited by asking questions and repeating information about once familiar events and/or people, preparing for appointments/day care well ahead of time and using notes and reminders endlessly.
  • Apathy or a lack of initiative about tasks that used to be routine, though now feel overwhelming. For example, the person who always enjoyed puzzles but no longer does them because they are too overwhelming and require skills he/she no longer possesses.
  • Frequent agitation may occur as people become less able to interpret their environment and control or express their feelings. For example, a person with AD may strike out at a caregiver.

Read Also: Frontotemporal Dementia Vs Alzheimer’s

What To Do About Swallowing Problems

As Alzheimer’s disease progresses to later stages, the person may no longer be able to chew and swallow easily. This is a serious problem. Difficulty with swallowing may lead to choking or cause food or liquid to go into the lungs, which is known as aspiration. This can causepneumonia, which can lead to death.

The following suggestions may help with swallowing:

  • Make sure to cut food into small pieces and that it is soft enough for the person to eat.
  • Grind or blend food to make it easier to eat.
  • Offer soft foods, such as yogurt, applesauce, mashed avocado, sweet potatoes, and bananas.
  • Don’t use a straw, which may cause more swallowing problems. Instead, have the person drink small sips from a cup.
  • Offer drinks of different temperatures warm, cold, and room temperatureto see which might be easiest for the person to drink.
  • Don’t hurry the person. He or she needs time to chew and swallow each mouthful before taking another bite.
  • Encourage the person to feed themselves as much as possible during meals. If the person needs support, try using overhand, underhand, or direct hand feeding approaches.
  • Don’t feed a person who is drowsy or lying down. He or she should be in an upright, seated position during the meal and for at least 20 minutes after the meal.
  • Say “swallow” to remind him or her to swallow.
  • Find out if the person’s pills can be crushed or taken in another form.

What To Do About Incontinence

Incontinence means a person can’t control his or her bladder and/or bowels. This may happen at any stage of Alzheimer’s disease, but it is more often a problem in the later stages. Signs of this problem are leaking urine, problems emptying the bladder, and soiled underwear and bed sheets. Be sure to let the doctor know if this happens. He or she may be able to treat the cause of the problem.

Accidents happen. Try to be understanding when they occur. Stay calm and reassure the person if he or she is upset. Incontinence supplies, such as adult disposable briefs or underwear, bed protectors, and waterproof mattress covers, may be helpful. Learn more about dealing with incontinence.

Also Check: Pain Medication For Lewy Body Dementia

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.

Caring For Loved Ones With Alzheimer’s Disease Can Pose Special Challenges For Families

Caring for Someone with Mid to Late Stage Alzheimer

NEW YORK – Many people have watched loved ones with Alzheimer’s disease, and sometimes their health struggles can be difficult for families.

CBS2’s Jenna DeAngelis sat down with an Upper West Side family who hopes their experience can help others.

As DeAngelis reports, music fills Bart Feller’s heart and, thanks to his late father, music is at the hear of his family.

“We learned to love music and get immersed in it through him,” Feller said.

Feller plays principal flute the New Jersey symphony. He also teaches at Julliard and Rutgers University. But he frequently performs for a special audience – his mother, Bernice. The 93-year-old has late-stage dementia and it has become challenging for her to communicate, but her son believes the melody is infused in her memory.

“The short term memory goes first, as you know, from Alzheimer’s. So these are longer, more established memories, and so they’re more accessible in the memory banks,” Feller said.

Her family fills her apartment with music, often. Her grandson sings her Yiddish songs to stimulate memories.

“Yiddish was the language that was spoken in her growing up household. So, if I say a Yiddish word, that sparks a remembrance and she gets a smile, or a laugh, or maybe even repeats the word with me. That’s of course a great moment and a great win,” Feller said.

Bernice spent decades selling costume jewelry and it’s still a big part of her life today.

Also Check: How Long Does Stage 7 Dementia Last

Agitation And Aggression In People With Alzheimers Disease And Dementia

Wandering isnt the only concern for people with dementia and the people who love them. You may have noticed that your loved one becomes agitated or exhibits increased aggression after an Alzheimers disease or dementia diagnosis.

Agitation isnt just a symptom its a behavioral syndrome that causes restlessness, increased aggression, emotional distress and uncontrolled motor activity. According to an article published in Frontiers in Neurology, agitation occurs in approximately 30% to 50% of people with Alzheimers disease, 40% of people with frontotemporal and vascular dementia, and in 30% of those with Lewy body dementia.

Findings Highlight Need For Suicide Risk Assessment In People Diagnosed With Dementia

To examine how a dementia diagnosis impacted suicide risk, investigators evaluated medical databases and death records in England from 2001 through 2019. Using files from the Office for National Statistics in England, they matched up to 40 control participants with each suicide case. The findings were adjusted for sex and age at suicide or index date .

A total of 594,674 people were included in the final analysis: 580,159 controls with a median age at death of 81.6 years old, and 14,515 people who died by suicide, whose median age at death was 47.4 years old.

There were 4,940 people who received a diagnosis of dementia, and 95 of those diagnosed died by suicide. Men were more likely to commit suicide than women 61 percent versus 39 percent. The median age at dementia diagnosis was 75.1 years old and the median age at death was 79.5 years old.

Researchers did not find an overall significant association between a dementia diagnosis and suicide risk, but they did find a significant increase in suicide risk in people who were diagnosed with dementia before the age of 65, those whod had a diagnosis of dementia within the last three months, and in people with dementia and a psychiatric comorbidity, such as depression.

Don’t Miss: End Stage Alzheimer’s Disease Symptoms

Most Seniors With Dementia In Canada Live At Home

About 61% of seniors with dementia in Canada live at home and they require support while staying there.

There are approximately 5.8 million seniors in Canada and about 5.5 million live at home. CIHI analysis finds that of the estimated 431,000 seniors living with dementia in 20152016, more than 261,000 were estimated to reside outside of publicly funded long-term care or nursing homes.

Canadians living with dementia want to maintain their independence they want to live at home and engage with their community, said Pauline Tardif, CEO of the Alzheimer Society of Canada. Comprehensive home and community care is an essential part of this equation. It helps maintain quality of life for people with dementia while also providing needed support for caregivers.

Seniors living with dementia who receive their initial assessment to determine eligibility for long-term care in a hospital are 6 times more likely to enter residential care than those assessed elsewhere

Seniors with dementia and their caregivers can follow 7 key strategies to help them remain in the community longer

How To Support A Loved One Who Has Received A Diagnosis Of Dementia

Caregiver Training: Wandering | UCLA Alzheimer’s and Dementia Care Program

Most people with dementia are aware of what the diagnosis means when they get it they still have insight, says Hugenschmidt. She offers the following advice for people who want to support a loved one who has received a dementia diagnosis.

Remember the humanity and dignity of the person. One thing I hear very often from people with dementia is that people talk to them differently as soon as they get a diagnosis, even though at that point they are likely still driving and mainly caring for themselves. They will say things to me like, I know that I cant remember things as well, but he talks to me like Im a child now, she says.

Lean into your friendship. People with dementia and their care partners also often tell me that friends and family pull away from them after the diagnosis. I think because of the stigma of the disease, people often dont know what to say or how to interact, she says.

Instead of pulling away, lean into your friendship, says Hugenschmidt. Go to coffee or out to lunch or dinner with the person. Listen to them. Understand that they have a disease that may change the way they communicate, but they are fundamentally still the person you have known and loved, she says.

Don’t Miss: How To Act Around Someone With Dementia

RELATED ARTICLES

Most Popular