If you’re a CDPAP caregiver for a person suffering from Alzheimer’s, this guide will help you better understand the challenges that accompany different stages of the disease and the skills you need in order to provide the best possible care.
We also wrap up the top-rated training programs that will allow you to gain a better understanding of Alzheimer’s disease and your role as a caregiver.
The Importance of Training for Caregivers of Alzheimer’s Patients
Alzheimerʼs disease is the most common form of dementia in older adults. Over 5 million Americans are currently living with Alzheimer’s disease and these numbers are expected to increase dramatically over the next few decades.
Alzheimer’s disease is an irreversible, progressive brain disorder that affects memory and reasoning, as well as movement and the ability to carry out everyday tasks. The disease is in most cases diagnosed after the age of 60. The risk of having Alzheimer’s increases with age and by the age of 90, more than 40% of the population is affected by the condition.
There is currently no cure for Alzheimer’s disease and it is often caregiving that makes the biggest difference to the patient’s life quality.
Challenges of caring for a person with Alzheimer’s
Caring for someone with Alzheimer’s disease is often a very stressful and emotional process.
Typical behaviors such as agitation, aggression, repetitive speech or actions, wandering, restlessness, refusal to eat and/or take medicine, paranoia, and hallucinations may be extremely challenging for a caregiver.
As the disease progresses and the patient’s cognitive and physical abilities decline, your caregiving tasks will become increasingly complex. At some point, nearly all Alzheimer’s caregivers experience sadness, anxiety, loneliness, and exhaustion.
Some of the biggest challenges of caring for a person with Alzheimer’s include:
- Dealing with memory loss
- Handling the stress
- Having patience
- Handling mood swings or behavior changes
- Helping with daily activities
- Keeping the patient positive and motivated
- Managing and administering medications
- Scheduling appointments and time management
- Dealing with health insurance, bills, and finances.
The burden of caregiving can put you at increased risk for serious health problems. Fortunately, there are strategies you can use to make your caregiving journey as rewarding as it is difficult.
The importance of caregiver training
Caregiver training will allow you to get the necessary medical information and learn different ways to manage challenging behaviors, improve communication skills, and keep the person with Alzheimer’s disease safe.
It’s important to keep in mind that your caregiving role will constantly evolve throughout the stages of the disease. That’s why it’s essential that you get the relevant education and use any available opportunities to exchange experiences and strategies with other caregivers. Research shows that caregivers who learn skills through training and participate in support groups experience lower stress and provide better care.
Understanding the Three Stages of Alzheimer’s
Alzheimer’s disease develops slowly and gradually worsens over several years. The disease typically progresses in three different stages: early (mild), middle (moderate), and late (severe). Alzheimer’s affects people differently, so that each person may progress through the stages in different ways and the stages may overlap.
Because your role as a caregiver will necessarily change as the disease advances, it is essential that you have a good understanding of the symptoms, expected behavior changes, as well as appropriate coping strategies relevant for each stage.
Early-stage Alzheimer’s (mild)
During early-stage Alzheimer’s, a person can function independently and interact with others. However, the patient may have difficulties performing certain tasks, such as driving, managing medications, working, or paying bills. At this stage, symptoms are usually noticeable only to the individual affected, family, and close friends.
Symptoms may include:
- Difficulty remembering newly learned information
- Asking the same questions over and over
- Forgetting to take medication
- Difficulty coming up with the right word or name
- Difficulty remembering names when introduced to new people
- Increased trouble with planning or organizing
- Getting lost in familiar places
- Losing or misplacing things
- Trouble handling money and paying bills
- Taking longer than normal to finish daily tasks
- Loss of motivation to complete tasks
- Changes in personality such as displaying uncharacteristic irritability or anger
As a caregiver, your role at this stage is mainly to provide emotional support and companionship to the patient and help them plan for the future.
Middle-stage Alzheimer’s (moderate)
Middle-stage is the longest stage of Alzheimer’s disease that can last for many years. During this stage, the symptoms become more pronounced and patients may find it difficult to express themselves and perform routine tasks without assistance. Though memory loss has progressed, they may still remember essential details about their life.
Symptoms may include:
- Increased memory loss and confusion
- Forgetting the names of family members and friends
- Forgetting the names of common items
- Difficulty recognizing acquaintances
- Forgetting past events
- Forgetting essential information about themselves like address, telephone number, age, or the school they attended
- Confusion about where they are or what day it is
- Difficulty learning new things
- Trouble completing tasks with multiple steps
- Difficulty coping with new situations
- Significant behavior and personality changes like suspiciousness and delusions
- Becoming restless and agitated
- Requiring help to choose proper clothing for the season or the occasion
- Having trouble controlling bladder and bowels
- Changes in sleep patterns, such as increased sleepiness during the day and restlessness at night
- Tendency to wander and become lost
- Compulsive, repetitive behaviors like hand-wringing.
At this stage, the patient will need help with some daily activities and self-care such as choosing the proper clothing, bathing, grooming, and using the bathroom. As a consequence, your role as a caregiver will also become more demanding. It is important that you seek support for yourself to prevent caregiver burnout.
Late-stage Alzheimer’s (severe)
The last stage of Alzheimer’s is the most difficult and usually the briefest stage of the disease. During this stage, symptoms become severe. The patient loses the ability to respond to their environment, communicate, and control movements. Their memory and cognitive skills degrade and personality changes are more pronounced.
Symptoms may include:
- Losing the ability to communicate coherently
- A decline in physical abilities, for example, becoming unable to walk without assistance, sit or hold up head without support
- Loss of awareness of the surroundings
- Forgetting recent events
- Excessive sleepiness
- Weight loss
- Trouble swallowing food
- Incontinence
- Need for assistance with personal care
- Vulnerability to infections
At this stage, the patient will require intensive care around the clock. A person with severe Alzheimer’s will highly benefit from suitable forms of interaction like listening to relaxing music or receiving reassurance through gentle touch. As a caregiver, you may need to resort to the use of support services such as hospice care, for example.
Skills That a Caregiver Should Have to Care for an Alzheimer’s Patient
Taking care of a patient with Alzheimer’s disease is a huge responsibility that requires a set of specific qualities such as attentiveness, efficiency, trustworthiness, patience, and dependability. Here are the main skills necessary to provide effective care for a patient with Alzheimer’s:
Expertise
As a caregiver of a senior with Alzheimer’s disease, you should be knowledgeable about the common symptoms, different stages of the disease, and how they affect the patient. Training and education will allow you to develop a better strategy for care.
Assistance in daily activities
The main part of caregiving for a patient with Alzheimer’s disease is support and assistance in activities of daily life. The amount of help needed will vary, depending on how far the disease has progressed. Common responsibilities of an Alzheimer’s caregiver include assistance with bathing, grooming, dressing, and eating. Besides, caregivers are often required to provide transportation, assist the patient with walking, cook meals, check the mail, pay bills, clean the house, do laundry, and administer medications.
Time management
Establishing routines and schedules is a common responsibility of an Alzheimer’s caregiver. The patient may still be involved in a community, have financial obligations, attend events and medical appointments. As a caregiver, you will often need to help with the organization and logistics of these activities.
Medical care
Most patients with Alzheimer’s need ongoing medical care both for Alzheimer’s disease and any other health problems they might have. One of the caregiver’s responsibilities is to create routines for providing medications, ensuring that the medication is taken safely. In addition, you may be required to help provide relevant health updates to the patient’s physician. It is crucial that you work together with health care professionals to provide the appropriate medical care.
Safety
As a caregiver, you are responsible to ensure the physical safety of the patient with Alzheimer’s. This is even more important knowing that the disease causes impaired motor skills and coordination, in addition to erratic behavior and a tendency to wander.
Creating a safe and comfortable environment for a person with Alzheimer’s is essential. If needed, you can turn for help to an occupational therapist or physical therapist to make sure the home is safe for both you and the patient. You can also get safety advice from your local Alzheimerʼs Association, the Area Agency on Aging, or from a physician who will provide a referral to a professional experienced in home modifications and assistive devices. As for Alzheimer’s patients who tend to wander and risk getting lost outside of their homes, you should register them with the Alzheimer’s Associationʼs Safe Return program and advise the local police.
Emotional support
In addition to necessary physical assistance in daily activities, caregivers should provide emotional support to patients with Alzheimer’s who often find the disease frightening and disorienting. Isolation and depression are shown to further aggravate the progression of the disease. That’s why emotional support and companionship are some of the most beneficial things you can provide as a caregiver.
Positive attitude
When caring for a person with Alzheimer’s, you need to remain positive and encouraging in your attitude and approach to caregiving. It’s essential to create a positive environment for the patient.
Empathy and patience
As a caregiver for a person with Alzheimer’s you will encounter many situations that require you to show empathy. Patients can easily become anxious or angry when they realize they forgot something. You will need to let them know that you understand the situation and help them find a solution.
Effective communication skills
It is essential that as a caregiver you have strong communication skills in order to avoid feelings of resentment, anxiety, and arguments. If the patient has difficulties communicating, you will need to be able to reach out to family members, neighbors, acquaintances, and health care providers to discuss health issues and medical treatments.
Adaptability
Alzheimer’s caregivers must be able to easily adapt to a variety of new situations as the disease progresses. You should be able to notice even the subtlest changes in a patient’s behavior, worsening symptoms, as well as evaluate the safety hazards and risks in the environment.
Observation
A person with Alzheimer’s may not pay attention to their own health issues such as cavities, infections, hearing loss, or impaired vision. That’s why as a caregiver you’ll need to have excellent observation skills and notice things like rashes, insomnia, or poor hygiene, for example. Detecting these issues will help improve the patient’s quality of life.
Self-Care
Finally, caring for a person with Alzheimer’s means also being able to take care of yourself. Dealing with certain behaviors can be extremely hard, frustrating, and emotionally draining and it is essential to be able to take a break from caregiving duties. Getting support and respite from caregiving will allow you to maintain your own health and well-being.
Protecting Your Alzheimer’s Patient
When you’re caring for a person with Alzheimer’s disease, home safety is crucial in order to prevent falls and injuries. Here are some home safety tips that will help you avoid potentially dangerous situations:
- Remove clutter. Keep all the areas where the patient walks free of furniture and electric cords. Remove any throw rugs and limit decorative objects to a minimum.
- Treat slippery and uneven surfaces. Place non-skid strips on tile floors and non-skid mats in the bathtub and shower.
- Keep stairs safe. Make sure stairs have at least one handrail that goes beyond the first and last steps. Cover stairs in carpet or apply non-skid strips. If the patient has balance problems, install safety gates in front of the stairs.
- Remove door locks or install them out of sight. Remove locks on all doors inside the house to prevent the patient from locking themselves in. Alternatively, place a latch or deadbolt above or below eye level. Hide an extra set of house keys near the door for easy access.
- Install a monitoring device. This might be particularly helpful if you are a caregiver for a patient in the advanced stage of Alzheimer’s disease.
- Install grab bars in the bathroom. Place grab bars near the toilet, in the bathtub, and in the shower. You may also want to install a shower chair.
- Use a faucet cover in the bathtub. A faucet cover made of foam rubber will help prevent injury if the patient falls in the bathtub.
- Take caution when using heaters. Don’t use portable space heaters in the bedroom. If the patient uses electric blankets, make sure to keep the controls out of reach. Never leave a person with Alzheimer’s alone beside an open fire in the fireplace. You may want to place red tape around radiators and other heating devices to prevent the patient from touching them when hot.
- Mark windows and glass doors. Place a decal on glass at the patient’s eye level to help them see the panes and prevent injuries.
- Secure large furniture. Secure the bookshelves, cabinets, and large TVs to prevent tipping and injuries.
- Limit access to potentially dangerous items. Lock up electrical appliances and hazardous products. You should install childproof latches on cabinets and drawers where you keep tools, appliances, paint, cleaning supplies, and other toxic materials.
- Use night lights. Place night lights in the patient’s bedroom, kitchen, and bathroom. This will allow for more visibility and prevent injuries if they need to get up at night.
- Prepare for emergencies. Display emergency numbers and your home address near the telephone. Install alarms that will notify the patient when a door or window is opened.
- Install smoke alarms and carbon monoxide detectors. Place smoke alarms and carbon monoxide detectors in the kitchen and the bedroom. Check them regularly and change batteries twice a year. If the patient has vision or hearing problems, you can install a smoke alarm with a flashing light or vibrating pad.
- Keep the medication out of reach. Keep all medication in a locked drawer or cabinet and use child-resistant caps. To ensure that medication is taken safely, you may want to use a pill box organizer and keep a daily list and check off each medication the patient takes. Prescription medicines should be clearly labeled with the patient’s name, dosage, and expiration date.
As the disease progresses, you should regularly evaluate safety measures in the patient’s home. It may also be helpful to occasionally request a physical therapy referral for a home safety evaluation. However, while protecting your Alzheimer’s patient, make sure that you are not creating a home that feels too restrictive. It should still encourage independence and social interaction of the patient and provide enough space for free movement and activities.
Best Alzheimer’s Caregiver Training Programs
There is no shortage of excellent information about Alzheimer’s and other forms of dementia available online. In addition, there are dozens of training programs, many of them completely free, if you want to know more about Alzheimer’s and learn how to best take care of a patient suffering from the disease. Here are the 10 best Alzheimer’s caregiver training programs to choose from:
Relias Academy Dementia Care Certification
The Relias comprehensive Dementia Care Certification program will prepare you for providing compassionate, person-centered care for patients with Alzheimer’s disease. This online training consists of 38 courses on topics such as coping with agitation and aggression, exercise and physical activity, driving safety, and healthy nutrition. The training meets the recommendations of the Alzheimer’s Association. Each one-hour course can be bought separately or you can purchase the entire bundle for $99.
Coursera Living With Dementia Course
Coursera’s free Living With Dementia course offered by The Johns Hopkins University is suitable both for family caregivers and caregiving professionals. Here you will learn how to care for a person suffering from Alzheimer’s disease and other neurocognitive disorders. The course consists of five modules with a total of 18 hours of courses: introduction to dementia and its stages, impact on the disease on the patient, caregiving and the home environment, and the care at the community level. Subtitles are available in English, French, Portuguese, Chinese, Russian, and Spanish.
Universal Class Alzheimer’s Disease 101
This online course will teach you how Alzheimer’s disease affects the brain, what are the common warning signs of the condition, and how to differentiate between Alzheimer’s symptoms and normal aging processes. In addition, you’ll learn about the challenges that come with taking care of someone with Alzheimer’s, home safety and security, dealing with behaviors common to the disease including anxiety, confusion and aggression, and legal and financial planning.
The course duration is 7 hours in total for 11 lessons. The price is $50 without certification and $75 for the training with a certificate.
Alzheimer’s Disease or Other Dementias CARE: Changing Aging Through Research and Education
This interactive educational course for families caring for persons with Alzheimer’s and other types of dementia was developed by HomeInstead Senior Care. Through several short classes, the program will provide you with basic information about Alzheimer’s disease and give you invaluable insight into providing better care for a patient with the condition. At the end of the course, you will be equipped with all the techniques you need to help improve the patient’s quality of life. Topics include understanding Alzheimer’s, minimizing cognitive and behavioral symptoms, encouraging engagement, and safety issues.
HealthCare Interactive Online Dementia Care for Families
The award-winning CARES training and certification program for families was developed specifically for those taking care of a loved one with dementia. It offers practical strategies and tips for caring for Alzheimer’s patients through the 5-step CARES approach. Included are video interviews with family caregivers, people with dementia, and dementia experts. The program was partly funded by a grant from the National Institute on Aging and was developed in cooperation with the national office of the Alzheimer’s Association and a national team of experts.
The training consists of 4 modules that take 4 hours to complete and includes certification. Once you have completed the Dementia Care for Families course, you may want to consider participating in one of their advanced training programs.
Alzheimer’s Association Education Center Programs
Alzheimer’s Association offers dozens of comprehensive free online programs, such as Warning Signs of Alzheimer’s, Understanding Alzheimer’s and Dementia, First Responder Training, Challenging Conversations about Dementia, Effective Communication Strategies, Legal and Financial Planning, and more.
UCLA Health Caregiver Education
This series of caregiver training videos are created by the UCLA Alzheimer’s and Dementia Care program to help caregivers understand how to provide better care for patients with dementia. The videos cover a range of topics including aggressive language and behavior, sleep disturbances, wandering, driving with Alzheimer’s, alcohol abuse, and paranoid thoughts.
In addition, live-streaming Alzheimer’s Caregiver Education webinars provide indispensable information about Alzheimer’s disease for caregivers and families. They include topics such as managing aggressive behaviors, stress and depression, managing the late stages of the disease, and getting help with caregiving, and new and emerging therapies for patients with Alzheimer’s.
Class Central Alzheimer’s Disease and Dementia Care
This intermediate course offered by the University System of Maryland addresses a variety of topics relevant for both future caregivers and healthcare professionals who wish to learn more about Alzheimer’s disease. The course addresses the role of the dementia caregiver, the symptoms and stages of the disease, effective communication strategies, and many other topics. The course is free with the possibility to purchase a certificate for $49.
Johns Hopkins School of Nursing Living with Dementia: Impact on Individuals, Caregivers, Communities and Societies
This 5-week training is designed for anyone from health professionals to family caregivers and friends of individuals with Alzheimer’s and other dementias. The course provides an overview of disease pathology, the three stages of Alzheimer’s, the typical illness trajectory, as well as current diagnostic criteria. It also examines specific strategies for helping patients and the impact of dementia on family members and the community in general. You can take the course for free, with the possibility to purchase a certificate for $45.
Alzheimer’s Foundation of America Educational Workshops and Continuing Education Trainings
Caregiver training by the Alzheimer’s Foundation of America will help you to develop the necessary skills to provide the best possible care to a patient with Alzheimer’s disease. The course facilitators use case studies, role play, and experiential activities. AFA’s courses and continuing education programs are approved by the National Association of Social Work and the Association of Social Work Boards. Check the AFA’s website for upcoming educational programs.