Houston, Texas, USA : Nearly 6 million Americans are living with Alzheimer’s disease, and that number is expected to increase to nearly 14 million by 2050. Aside from the disease’s burden to the patient, it also impacts family caregivers. According to the Alzheimer’s Association, 16.1 million Americans provide unpaid care for people with Alzheimer’s or other dementias, accounting for an estimated 18.4 billion hours of care.
As the number of adults with Alzheimer’s or other dementias continues to grow, geriatricians at the University of Alabama at Birminghamwant to educate both patients and their loved ones about ways to maintain a safe and supportive living environment, while also providing solutions for caregivers to use when caring for the patient.
“When approaching dementia families, I follow the safe and sane rule,” said Andrew Duxbury, M.D., a geriatrician in the Division of Gerontology, Geriatrics and Palliative Careat UAB. “Everything we do needs to make the patient safe and the family sane. In terms of safety, it boils down into the big four: meals, wheels, bills and pills.”
Duxbury says ensuring a loved one is provided for under the four categories of meals, wheels, bills and pills is the most important way to make sure someone is cared for and safe.
“You need to consider whether the person is capable of preparing food, eating healthy and appropriate amounts of food, and has the awareness that they need to eat,” Duxbury said. “If any link in that chain breaks, the person may not eat.”
Every person’s experience with Alzheimer’s is different, but there are a few things caregivers can do to allow someone to maintain their independence in the kitchen while also making sure they are safe.
“The biggest issue is leaving things on the stove and forgetting to turn the oven off; but if cooking is part of someone’s routine, let them cook on their own while monitoring what they are doing from another room. Think about it this way: Would you let your 12-year-old make dinner? You may, but you would definitely be in the next room listening for anything that could go wrong.”
Another option is to provide choices. For example, if it is your mom, ask her if she wants to cook things that can be made in the microwave or require minimal prep. You may also think about removing scissors and knives from the countertop and drawers, put labels on the cabinets, and disguise the garbage disposal switches to prevent someone from turning it on accidently.
According to Duxbury, it is not safe for patients to prepare food on the stove or in the oven in late dementia. It is important for the caregivers to have a conversation with their loved one’s doctor about the stage of the disease to evaluate their safety in the kitchen.
Losing the independence driving provides can be upsetting. It is important to acknowledge a person’s feelings and preserve his or her independence, while ensuring the person’s safety and the safety of others.
Giving up the keys is one of the biggest challenges a caregiver and their loved one face when it comes to dementia, especially if that person is a man, according to Duxbury.
“A lot of times, an older man may just want to have the car keys, feel them in his pocket and see the car in the driveway,” he said. “You can let him have the keys, just not the key to the actual car. Give him the keys to a different car or remove the car key from his set of keys. This way, he has the keys, hears them jingle in his pocket and sees his car, but can’t go anywhere.”
Another solution is to reduce the need to drive by having medications, groceries or meals delivered to the home.
Once one is unable to independently drive or get to places on his or her own, the caregivers need to ensure there is another source of transportation, especially for doctor’s appointments.
The most important thing is to evaluate the person’s financial health and make sure there is enough money to keep the bills paid. It is also necessary to take steps to protect a loved one’s money and make sure he or she is not being taken advantage of or scammed.
To prevent elder financial abuse, have the conversation with a loved one in the earlier stages of Alzheimer’s or dementia, and remember that the person does not live in the same reality as one without dementia.
“One of the top mistakes made by families is that they try to use adult rationality and logic with people with dementia, and these people’s brains don’t work that way. All it does is frustrate them because it doesn’t make any sense.”
When discussing finances, Duxbury suggests taking a less startling approach.
“If you are speaking to a parent, tell your mom or dad, ‘we know you are fine; but since you are older, it is always good to have someone doublecheck your finances to make sure someone is not taking advantage of you.’ Then that can move into adding the caregiver’s name as a second name on accounts and access to their finances,” he said.
Caregivers can also prevent upsetting their loved one once that person can no longer be trusted to manage their money. Instead of telling that person he or she can no longer be in charge of their finances, let them think they are still paying the bills by giving them expired checks to sign so they think they are still in financial control.
Aging adults often take multiple medications, which can lead to someone with dementia forgetting to take their pills or taking pills together that cause adverse side effects. One of the most important roles of the caregiver is to ensure their loved one is not mismanaging medications, going to doctor’s appointments and keeping an eye on their other health issues.
According to Duxbury, most people with dementia think they are fine. That is why it is crucial for caregivers to stay on top of their loved one’s health.
“Families need to remember that a person with dementia does not live in the same reality that we live in,” Duxbury explained. “They live in a reality of their brain’s dementia. These individuals may have completely different perceptions of the world around them and what it means. We don’t have a good way of entering their reality. We have to accept their reality for what it is.”
To help a loved one manage their medications, set up a pill box where you put a week’s worth of pills, sorted by day. This way you can check to see whether the person took the medications. You can also set up a timer in your loved one’s home to remind him or her to take their pills. Some versions of pill boxes have timers and locks you can set to prevent your loved one from taking medications from the wrong day.
The caregiver should also have a master list of medications taken, lock up or store out of reach unnecessary medications, and understand what each drug is for and the proper dosing schedule and side effects.
Helping someone with Alzheimer’s or dementia stay content in their environment is an important role for the caregiver.
“Human beings like for things to stay the same,” Duxbury said. “We develop a pattern we like. The best thing you can do with someone with dementia is to understand that it is real and it is happening and be willing to make changes as that process goes along to try to keep the individual and life patterns in sync as much as possible.”
For example, if a caregiver’s mother was always responsible for caring for the house, but she is no longer able to do that and does not realize that she is not keeping up the housework, suggesting she hire a maid may upset her because, in her reality, she does not need one. Instead of telling her a maid has been hired, couch it in a different way.
“One of the things I tell families to use with older women in particular is to say, ‘isn’t it great you are now old enough that you can enjoy life and have a companion to help you make it so much better?'” Duxbury said. “Now the mother thinks that the maid, who in her mind is a companion, is her choice and is there to keep her company, not there to help her do something she thinks she is already doing.”
Another example is for a person who likes to do laundry, but continues to ruin the clothes by putting bleach in the washer. Duxbury says to instead lock away the good clothes and linens and buy used colorful sheets and clothes that the person will easily see to wash instead. Replace the bleach with water and the detergent with cheap powdered milk. This way the launderer will still be able to do the usual tasks and feel helpful, but not ruin clothes.
“If you have a patient who loves to garden, you have to build limits around them so it is a safe activity, but also something that still meets their needs,” Duxbury said. “If it is someone who is a fall risk, maybe think about building some garden benches so we can sit on a stool while we do it.”
Frustration and irritation are common symptoms of dementia. When a person cannot remember or is constantly confused, they may become frustrated, fearful and even try to fight the changes they are experiencing. Instead of trying to rationalize with them and also getting frustrated, try to give them an activity to distract them.
“When most people are getting frustrated, they are usually easily redirectable. They just need to be given some other task or something to work on. If your loved one used to work in an office, save your junk mail and give it to them when they become upset. Ask them to sort it and categorize it. This way they are redirected and engaging in a safe activity.”
Providing concrete choices is another way to help someone feel independent and valued.
“Give them choices they can make,” Duxbury said. “As people become more demented, their ability to make abstract choices becomes damaged; but they can make concrete choices.”
Instead of asking your mother what she wants to wear today, ask her if she wants to wear the blue dress, green dress or red dress. If you are at dinner with your father, do not ask him what he wants to eat off the menu.
“If you put the menu in front of someone with dementia, it might as well be another language,” Duxbury said. “Instead, say ‘you like chicken, fish and pasta. Which one would you like to eat?’ Then let him choose from those options.”
Caring for someone with dementia is a top priority, but the sanity of the caregiver is equally important.
“The caregivers need to get away from their patients,” Duxbury suggested. “There has to be some sort of respite built into how the system works. They have to have a break from the patient and time to take care of themselves.”
Duxbury suggests adult day care centers or home health care. This way, the caregiver is able to take time to do something on his or her own.
“It’s important the caregiver does something he enjoys, not something for the patient—like going to the grocery store or picking up prescriptions,” he said. “Do something that makes you feel good and gives you a break from caring for your loved one.”
Caring for seniors with dementia and their caregivers: A guide for physicians
Community-based health care providers, such as physicians, nurse practitioners and others, should be aware of services and resources to help people living at home with dementia as well as their caregivers. A review in CMAJ (Canadian Medical Association Journal) aims to provide guidance to health care providers as well as government and health system planners, based on recent evidence.
“All health care providers should be aware of their local resources for dementia and which services may be most beneficial for their patients and caregivers,” writes Dr. Dallas Seitz, Queen’s University, Kingston, Ontario, with coauthors. “Health system planners and policy-makers should be aware of services that have been shown to be beneficial for people and plan to meet the increasing demand for these services in the future.”
In Canada, over 500 000 people are affected by dementia, and society spends $15 billion annually caring for this population.
Highlights of the review:
- Early detection of dementia is an important first step for accessing services by proactively identifying people at risk (case finding) rather than through broad population screening programs. Identifying dementia early can relieve stress and uncertainty for patients and their caregivers and facilitate early connection to supports.
- Evaluation for dementia should include patient history of cognitive and functional changes, medication review, cognitive screening tests, blood work and neuroimaging in some situations.
- Community-based supports, such as in-home support services, caregiver education and training, respite programs and more, have been shown to delay admission to long-term care facilities.
- Caregiver education programs and coordination of care have been effective at delaying placement in homes and are cost-effective.
- Reducing caregiver stress is important for keeping people at home as long as possible.
- Referral to dementia specialists may need to be selective, given the limited number of specialists and the increasing number of people with dementia. Referrals should be made when there is diagnostic uncertainty, marked change in a person’s behaviour, challenges with medication and other complicating problems.
Some parts of Canada may currently have limited access to supports mentioned in the review.
“The identification and care of community-dwelling people with dementia and their caregivers is complex and will often involve multiple supports and services to optimize outcomes. Existing guideline recommendations for dementia and high-quality evidence underscore that community-level multicomponent supports, including caregiver education and training programs, some forms of respite programs and case management approaches for dementia, are effective in delaying admission to long-term care settings for older adults with dementia and reducing caregiver stress,” the authors conclude.
Citation : “Care of community-dwelling older adults with dementia and their caregivers”Canadian Medical Association Journal. www.cmaj.ca/lookup/doi/10.1503/cmaj.cmaj.170920
Setting personal goals for dementia care
Dementia is a health condition that affects your memory in ways that can make it difficult to carry out your usual daily tasks. The most common cause of dementia is Alzheimer’s disease, which causes abnormal changes that kill brain cells. However, there are many other types of dementia. Overall, dementia is a long-term illness, and most people live from four to 10 years after being diagnosed.
When you are first diagnosed with dementia, your goals may be to preserve your ability to perform your daily activities. But as the disease progresses, your goals may shift and your preferences for your care may shift with them. Eventually, you may wish to make sure that your preferences and expectations are known, particularly for end-of-life care. You may also want to be sure those wishes can be put into action by those who might make decisions for you when you don’t feel comfortable or are no longer able to make them on your own.
Healthcare providers can use a tool called “goal attainment scaling” (GAS) to help you set your personal health goals and measure whether you’re meeting them. Researchers have been using GAS for decades to measure the effects of mental health and rehabilitation efforts.
In a new study, researchers used GAS when caring for people with dementia to learn more about these individuals’ personalized goals for care. Their study was published in the Journal of the American Geriatrics Society.
Participants were recruited from the UCLA Alzheimer’s and Dementia Care (ADC) program, a dementia care management program. The program uses nurse practitioners partnered with primary care providers and community-based organizations. It addresses the complex care needs not only of people living with dementia but also of their caregivers.
The study participants were required to have a diagnosis of dementia, and to have a family member or friend serving as a caregiver who also was willing to participate in the study.
The researchers developed a process for using GAS to set goals and to measure whether participants reached those goals. In a first phase of the study, they tested goal setting with 32 people who had dementia and their caregivers. Caregivers were spouses or children, and most lived with the patient. The researchers also trained five nurse practitioner dementia care managers (DCMs) in using GAS.
In the next phase, the dementia care managers helped an additional 101 people with dementia and their caregivers set care goals. The research team used a scale to measure how well the participants achieved their goals 6 and 12 months after setting them. The researchers then conducted interviews with the patient-caregiver teams as well as with the DCMs to explore goal setting and measurement.
The researchers learned that 84 percent of goals set by patient or caregivers were non-medical, meaning they didn’t address healthcare treatments specifically. Most often, the goals focused on improving quality of life for the person with dementia, followed by caregiver support goals (goals that help reduce caregiver stress or make caregiving as easy as possible).
Some commonly chosen goals for the person with dementia included:
- Maintaining physical safety
- Continuing to live at home
- Receiving medical care related to dementia
- Avoiding hospitalization
- Maintaining mental stimulation
- Remaining physically active
Commonly chosen caregiver goals included:
- Maintaining the caregiver’s own health
- Managing stress
- Minimizing family conflict related to dementia caregiving
The researchers concluded that goal-setting measures could be useful in caring for people with dementia, but that more research is needed.
The researchers concluded that GAS can be used in clinical care to help people with dementia and their caregivers set and achieve personalized health goals. Goal setting may help people with dementia work with healthcare professionals and caregivers to identify and achieve realistic goals that are most important to them.
Citation : Lee A. Jennings et al, Personalized Goal Attainment in Dementia Care: Measuring What Persons with Dementia and Their Caregivers Want, Journal of the American Geriatrics Society (2018). DOI: 10.1111/jgs.15541