Guide to Patients With Dementia and Alzheimer’s for Nurses and Caregivers

Dementia and Alzheimer’s disease are debilitating and devastating conditions for the individuals experiencing them, as well as their caregivers. They are both highly prevalent conditions that are becoming increasingly common in Americans over the age of 65. By 2025, as many as 7 million seniors could have Alzheimer’s disease. Barring any significant medical discoveries, this number is projected to almost double to 13.8 million cases just 25 years later.

However, the healthcare system may not be prepared to provide high-quality care to these patients. Almost 40% of surveyed primary care providers (PCP) aren’t comfortable diagnosing dementia or Alzheimer’s disease, while about one-fourth haven’t had any training in either diagnosing or caring for these conditions. Combined with a rapidly aging population and clinical staffing shortage, this lack of expertise means that millions of Americans won’t get the treatment they need to live happily and comfortably.

Whether you’re just starting as a nurse or looking to take your career to the next level, it’s crucial to learn more about Alzheimer’s and dementia. With more knowledge at your disposal, you’ll be better equipped to provide high-quality care to all of your current and future patients.

---

---

Dementia: Symptoms and Warning Signs

Dementia refers to the loss of memory, decision-making skills, and thinking abilities that are severe enough to negatively impact daily life. It isn’t a disease in and of itself, but rather a group of symptoms related to memory impairment. Several different conditions, including Alzheimer’s disease, can cause dementia. 

The Centers for Disease Control (CDC) notes that age is the biggest risk factor for developing dementia, as people age 65 and older are most likely to be affected. However, dementia can still impact younger people. Early-onset dementia most commonly affects people in their 40s and 50s, but in some cases, symptoms can begin when someone is in their 20s or 30s.

It’s always best to detect and begin treating dementia as early as possible. Be on the lookout for the following warning signs of dementia, regardless of a patient’s age:

• Changes, even small ones, in short-term memory;
• Shifts in mood or personality;
• Inappropriate or out-of-character behavior;
• Trouble completing basic or familiar tasks;
• Struggles with language, communication, and finding words;
• Listlessness, apathy, or depression;
• Trouble following directions or stories;
• Difficulty with spatial reasoning and coordination;
• General confusion or disorientation.

Initial symptoms are typically mild; someone in the earliest stages of dementia may seem perfectly healthy. It can be even more challenging to detect dementia early in senior adults, as it can be mistaken for normal signs of aging.

The symptoms of dementia will become more severe over time, particularly if left untreated. Depending on the cause, dementia symptoms may even be reversible. Either way, treatment can help manage symptoms, slow their progression, and make life easier and more comfortable for patients.

Alzheimer’s: Symptoms and Warning Signs

Alzheimer’s is a neurological disease that, due to physical changes in the brain, impairs memory, thinking skills, and cognitive functioning. It becomes progressively worse over time, is irreversible, and has no cure. It leads to a continuous decline in someone’s ability to function, and, eventually, death. Currently, it’s unclear what, precisely causes or leads to Alzheimer’s.

Alzheimer’s disease is the most common cause of dementia; the World Health Organization estimates that it may play a role in as many as 60% to 70% of all dementia cases. Like dementia, age is the greatest risk factor for developing Alzheimer’s disease. Most people with Alzheimer’s develop symptoms after the age of 65, though it can affect younger individuals. 

Though there is no cure for Alzheimer’s, treatment can help patients cope and improve their symptoms. It’s also best to catch Alzheimer’s early, so patients can get treatment and support as quickly as possible. Some of the major warning signs of Alzheimer’s you should look out for include:

• Repeating statements or questions multiple times;
• Personality shifts and mood swings;
• Forgetting entire conversations or events;
• Withdrawing from social activity, works, or previously-enjoyed activities;
• Struggling to remember words or the name of a person, place, or thing;
• Being unable to multitask;
• Lost or misplaced items;
• Struggling to work with numbers, such as when paying bills or managing finances;
• Making out-of-character judgments or strange decisions, such as wearing clothing that is inappropriate for the weather;
• Lowered inhibitions;
• Any struggles with remembering new information or recent activities, events, and conversations.

Alzheimer’s and dementia can have similar warning signs and symptoms. You may even confuse the two when working with patients. For instance, you may notice a patient exhibiting some signs of dementia and encourage them to talk to their doctor about it, leading to an Alzheimer’s diagnosis.

Caregiving Considerations for Treating Patients With Alzheimer’s and Dementia

Alzheimer’s and dementia don’t just affect the brain; they can have significant impacts on virtually all aspects of a patient’s life. As such, patients who are dealing with either condition require unique care and support from their loved ones and healthcare providers.

You must approach patient care appropriately when working with patients who have memory loss conditions. If you aren’t properly prepared, providing this specialized care can cause anxiety, lead to compassion fatigue, or even result in caregiver burnout — as well as substandard care for your patients.  

To overcome these challenges and continue providing high-quality care, it’s crucial to consider the following best practices when treating patients with dementia or Alzheimer’s:

Pain Management 

Pain may not be the first thing that comes to mind when working with patients who have dementia or Alzheimer’s, but it is a common symptom experienced by patients. It’s difficult to assess the level of pain patients experience if they struggle with verbal communication, particularly in later stages of illness. This means patients may deal with varying degrees of pain and suffer unnecessarily.

It’s possible to tell when nonverbal patients are experiencing pain with the help of different pain assessment and management tools, such as the Abbey Pain Scale or Pain Assessment in Advanced Dementia Scale (PAINAD). Both of these systems rely on observing nonverbal cues — such as body language, changes in behavior, and facial expressions — to notice when patients are in pain. 

These tools work best when you spend a lot of time with the same patients. If you know someone well, you’ll know what behavior is normal for them and what their usual level of comfort is. With an established baseline, you can easily recognize when they begin to experience pain and address the issue accordingly.

Personal Care

People with dementia and Alzheimer’s may struggle to maintain their personal hygiene. They may simply forget that they need to care for themselves, or, in later stages, forget how to do so. In addition, tasks like bathing or getting dressed can be physically demanding for some seniors, depending on their other health conditions. 

When working with patients on personal care and hygiene, remember that they aren’t just patients — they’re people. They have unique personal needs that need to be met. Always treat them with kindness and respect their autonomy. Give them options and help them make decisions instead of making decisions for them.

Dealing with the sudden loss of privacy and independence can be difficult for your patients. Try to be sympathetic to this struggle during your work, even if things are frustrating or difficult for you.

Nutrition

Nutrition is another area that may be commonly neglected by patients with dementia and Alzheimer’s. At first, they may simply forget to eat or drink, or forget how to cook. As their memory worsens, patients may forget how to eat, chew, and swallow altogether. Nutritional difficulties may not even be related to their memory loss, but rather due to medication or an unrelated health condition.

Of course, patients must continue to eat a balanced diet. Some studies suggest that eating a nutritious diet may help delay Alzheimer’s disease. Even once someone is experiencing a memory loss condition, the right diet could help prevent it from worsening or alleviate symptoms.

There are many ways you can help patients with dementia and Alzheimer’s continue to eat, but the strategy you need to take will depend on what your patient is struggling with. Whether they need adaptive utensils to make eating easier or fun reminders so they remember meal times, don’t be afraid to try different and creative solutions. That way, you’ll find something that works well for your patient’s unique needs.

Falls

Falling is a danger that all seniors could face. According to the CDC, about one-fourth of all seniors fall each year. Because dementia and Alzheimer’s can impact balance and spatial reasoning, people with these conditions are at an even greater risk of falling. This is especially concerning if your patients have any other personal factors that make them more likely to fall, such as a history of falls or impaired mobility.

Knowing that your patients are at greater risk is a crucial first step, but there is more you can do to prevent falls:

• Keeping rooms and walkways clear to prevent tripping or stumbling;
• Supervising or providing a safety companion to help patients walk; 
• Keep patients occupied and entertained so they are less likely to wander or move around unnecessarily;
• Promoting safe physical activity to improve balance and coordination;
• Providing better lighting so patients can see better;
• Offering assistive devices, such as a walker or handrails, when necessary;
• Encouraging appropriate clothing and footwear;
• Assessing medications, especially if they make patients feel dizzy.

It can be difficult to keep patients safe from falls as their condition worsens. They may forget how unsteady they are, or, in later stages of the disease, forget how to walk altogether.

No matter what environment you work with patients in, you have to make fall prevention a priority. Over 30,000 seniors die from falling annually; even non-fatal falls can be physically devastating and make patients more likely to fall again. You should respond to falls appropriately if they happen, but it’s best to focus on preventing them in the first place.

Wandering

Alzheimer’s and dementia can cause confusion, affecting patients’ ability to remember directions or navigate familiar places. Whether due to disorientation, stress, or remembering old routines, this can result in patients wandering or getting lost. 

Wandering is not always or even inherently dangerous, such as if a patient is wandering in a care community or throughout their home. When patients leave safe environments, though, wandering can pose a variety of different health and safety risks. Patients can get exposed to extreme weather, fall, get hurt in traffic, or be taken advantage of by unkind individuals. 

It’s best to try to prevent patients from wandering in the first place. Some precautions you can take include:

• Providing more supervision;
• Putting up signs on doors, such as “Stop” or “Do not enter”;
• Camouflaging doors;
• Installing locks, latches, deadbolts, or safety devices on doors and windows to deter their use or limit their opening;
• Keeping items that are associated with leaving, such as keys and shoes, out of sight;
• Ensuring patients have some kind of identification and emergency contact information on their person, in case they do wander;
• Using a monitoring system or the GPS tracking feature on the patient’s smartphone;
• Letting neighbors and community members know about the patient’s wandering, especially if they tend to do so frequently.

If a patient does go missing, begin searching for them immediately. If you don’t find them within 10 or 15 minutes, you should notify the authorities. Once you find them, be sure to take steps to try and prevent any future wanderings.

Social Relationships and Interactions

Individuals with Alzheimer’s and dementia may struggle with staying social or navigating social interactions. These conditions can cause changes in mood, behavior, and personality, such as lowered inhibitions and feelings of lethargy or depression. As these conditions worsen, patients may even forget who their loved ones are or how to talk and interact entirely.

Interacting with patients with memory loss conditions can be challenging, both for loved ones and caregivers. It’s important to learn how to properly communicate with patients;  you will likely have to use new strategies to make these interactions successful. Above all else, be patient while you learn how to navigate these situations. The more practice you have, the easier it will be to interact with all of your patients.

Despite the challenges of doing so, patients need to maintain social connections. Social interaction may reduce the risk of developing dementia or Alzheimer’s, but it’s also thought that it can increase the quality of life for patients who have already been diagnosed. Try to help your patients maintain their relationships with their loved ones while encouraging them to make new friendships and connection

---

---

End-of-Life Care for Geriatric Patients

If you work with patients who have dementia or Alzheimer’s, you will almost certainly have to provide end-of-life care. These conditions aren’t always the cause of death for diagnosed patients, but they can be fatal and have no cure. 

Nurses play an important advocacy role in providing end-of-life care. Pay close attention to your patients, especially if they are nonverbal or struggle with communication, so you can care for them properly. Do your best to follow previous instructions you’ve been given (either by your patient or their loved ones) for providing care, or providing care that you know aligns with their preferences.

Above all else, your primary focus should be on making them comfortable in their final days. You can also connect them with their loved ones and help them say goodbye. This is an intimate and challenging experience, so always be respectful and kind while guiding your patients and their family through this time.

Mental Health and Self-Care Tips for Caregivers

Death may be a normal part of your job as a nurse, but providing end-of-life care can still take its toll. You should take some time to look after your mental health, both on and off the clock. Self-care can look different for everyone, but the following suggestions can help you get started:

• Keep a consistent routine;
• Look for opportunities to take a mental break during work (such as while washing your hands or taking a bathroom break);
• Exercise or be physically active outside of work;
• Practice mindfulness, deep breathing, meditation, or gratitude;
• Eat a balanced and nutritious diet;
• Try a new hobby or enjoy an existing one;
• Spend time with friends and loved ones;
• Do a relaxing activity, such as reading;
• Stay hydrated;
• Keep a journal;
• Get professional support if you feel you need it.

You may have to try different strategies to find something that works well for you. Don’t be afraid to get creative, and don’t give up if it takes time to find the right self-care practice.

Remember that practicing self-care is not selfish. Not only does neglecting your emotional needs negatively impact your health, but it can also affect your patients. You cannot provide the best care to your patients if you feel emotionally exhausted or upset. Simply put, taking care of yourself and your mental health is essential to being a great nurse and having a long, fruitful career.

Dementia and Alzheimer’s Nursing Careers

Several nursing specialties require direct and frequent work with patients who have dementia or Alzheimer’s:

• Home Health Nurse: As a home health nurse, you’ll work in homes to provide care to your patients. The day-to-day duties of your job can vary greatly, depending on the patient’s needs and care plan. People who have late-stage dementia or Alzheimer’s may prefer to receive care in the comfort of their own homes, rather than a healthcare facility. 
• Geriatric Nurse: Geriatric nurses specialize in providing healthcare to seniors. You can work as a geriatric nurse in a variety of healthcare settings. Because seniors are at the greatest risk of developing dementia or Alzheimer’s, you’ll likely encounter patients with these conditions in your daily work. 
• Psychiatric Nurse: Psychiatric nurses specialize in providing care to patients who are coping with mental illness. They also commonly work with patients who have Alzheimer’s and dementia. You can work in a variety of healthcare settings, including long-term memory care facilities, and provide different kinds of care as a psychiatric nurse.

Many different available nursing jobs will allow you to work with patients who have dementia and Alzheimer’s. Depending on where you’re at in your career, you may be able to work with patients who are experiencing dementia or Alzheimer’s — without committing to a specialty — as a registered nurse or nurse practitioner.

Dementia Care Training and Certification

Even if you don’t choose to specialize as a nurse, you can still work with patients who have dementia and Alzheimer’s. However, you may want to pursue additional training to make sure you’re fully qualified to provide this kind of care. 

There are many courses and training programs you can take to get certified as a memory loss caregiver. Many of these certifications are open to family members, non-medical caregivers, and healthcare professionals, including:

• Care Academy PAC Dementia Training: This course prepares caregivers to work in home care settings.
• CARES for Organizations, Individuals, and Families: Healthcare Interactive offers dementia training, certification, and credentialing for entire organizations, healthcare professionals, and family caregivers.
• Certifications from the National Certification Board for Alzheimer and Aging Care: Depending on your background, you can get certified as a caregiver, educator, or relocation and transition specialist.
• Certifications from the National Council of Certified Dementia Practitioners: The NCCDP offers over a dozen different dementia care certifications for practitioners, caregivers, and first responders.
• Dementia Capable Care Training from the Crisis Prevention Institute: This certification trains front-line staff and healthcare workers to support patients through all stages of dementia. 
• In the Know Caregiver Training: IKN provides both online and instructor-led training courses for individuals working in all care settings, including home healthcare, hospice, and hospitals.
• Person-Centered Dementia Care Training Program and essentiALZ Exam: Offered by the Alzheimer’s Association, this online training program prepares professionals to work in long-term, community care settings. 
• Specialized Dementia Programs from AlzBetter: AlzBetter offers a variety of dementia certification programs for practitioners who work with patients in different settings.
• Welderly Care Dementia Training and Certification: Welderly Care certifies family caregivers, healthcare professionals, home healthcare workers, and senior community staff members to properly care for patients with dementia and Alzheimer’s. 

Some certifications may require you to undergo a certain amount of continuing education (CE). In many states, you are legally required to do so to keep your certification and nursing license active. The nature and amount of education will depend upon state laws, your employer’s requirements, and the certification itself. 

CE is essential for nurses to keep providing the best care possible for their patients, but it is particularly important for memory care. Dealing with patients who have dementia and Alzheimer’s can be challenging, frustrating, and exhausting. However, studies exploring nurses’ experiences with patients who have dementia suggest that memory care CE can help support nurses in their work, improving both quality of care and job satisfaction. 

If you work in memory care, you may still want to pursue CE, even if you aren’t legally or professionally required to do so. CE makes you more employable and can help open up future opportunities; it also makes it easier to fight stress that arises in your current job. Simply put, it doesn’t just benefit your patients — it’s also beneficial for you.

Additional Resources on Dementia and Alzheimer’s Care

The following organizations and resources may be helpful if you’re looking for additional information or support in providing high-quality care to individuals with dementia or Alzheimer’s:

• Alzheimer’s Association 24/7 Helpline: This helpline offers support to individuals living with Alzheimer’s and dementia, as well as their caregivers and family members.
• Alzheimer’s and Dementia Resources for Professionals: This page from the National Institute on Aging houses different tools, training materials, and resources for healthcare professionals who treat patients with Alzheimer’s and dementia.
• American Brain Foundation: The American Brain Foundation is a nonprofit organization that connects researchers with donors to study — and ultimately cure — brain diseases and disorders.
• Care Training Resources: This page from the Alzheimer’s Association provides a variety of information for caregivers and loved ones about both Alzheimer’s and dementia.
• Caregiver Resources & Long-Term Care: From the U.S. Department of Health and Human Services, this resource page offers information to support family caregivers and loved ones with all aspects of care for individuals with Alzheimer’s or dementia.
• ClinicalTrials.gov: This government database helps interested volunteers find clinical studies to participate in, so they can contribute to Alzheimer’s and dementia research.
• Fall T.I.P.S: This website contains a toolkit designed to help caregivers prevent patient falls in hospital settings.
• Family Caregiver Alliance: The FCA works to improve the quality of life for family caregivers and the individuals they care for. They offer a diverse pool of services, including care planning and legal and financial assistance.
• National Council of Certified Dementia Practitioners Seminars: The NCCDP offers several different seminars and training sessions for caregivers and first responders who work with patients with Alzheimer’s and dementia.
• National Partnership – Dementia Care Resources: This page from the Centers for Medicare and Medicaid Services contains a list of links to various tools, research, and training materials for healthcare providers.
• Nursing Career Resources: This page from Incredible Health provides a list of different resources available to nurses who need professional development and support.

---

---