Alzheimer’s & Dementia Care Guide

Alzheimer’s is the most common type of dementia, but there are many different forms of dementia.

• Creutzfeldt-Jakob Disease
  • Creutzfeldt-Jakob disease (CJD) is a degenerative brain disorder that leads to dementia, and ultimately death. CJD symptoms can be like those of other dementia-like brain disorders, such as Alzheimer’s disease. It is marked by rapid mental deterioration, usually within a few months.

• Parkinson’s Disease Dementia
  • Parkinson’s disease dementia is a decline in thinking and reasoning skills that develops in some people living with Parkinson’s at least a year after diagnosis. Certain factors at the time of Parkinson’s diagnosis may increase future dementia risk, including advanced age, greater severity of motor symptoms, and mild cognitive impairment.

• Down Syndrome
  • As people age, those that have been affected by Down syndrome have a higher risk of developing a type of dementia that’s either the same or very close to Alzheimer’s disease. Scientists think that the increased risk of dementia, and other health issues associated with Down syndrome, results from genes present.

• Alzheimer’s Disease
  • One of the leading causes of death in the United States, Alzheimer’s disease, is the most common form of dementia. Alzheimer’s progresses gradually and intensifies over time, resulting in confusion of time and space and causing an inability to understand and perform daily life tasks and functions.

• Vascular Dementia
  • Vascular dementia is a decline in thinking skills caused by conditions that block or reduce blood flow to various regions of the brain, depriving them of oxygen and nutrients. Vascular damage that starts in the brain areas plays a key role in storing and retrieving information and may cause memory loss similar to Alzheimer’s disease.

• Korsakoff Syndrome
  • Korsakoff syndrome is a chronic memory disorder caused by a severe deficiency of thiamine (vitamin B-1). Korsakoff syndrome is most caused by alcohol misuse, but certain pre-existing conditions can also cause the syndrome.

• Frontotemporal Dementia
  • Frontotemporal dementia (FTD) refers to a group of disorders caused by progressive nerve cell loss in the brain’s frontal lobes (the areas behind your forehead) or its temporal lobes (the regions behind your ears).
  • Frontotemporal dementia inevitably gets worse over time and the speed of decline differs from person to person.

• Huntington’s Disease
  • Huntington’s disease (HD) is a progressive brain disorder caused by a defective gene. This disease causes changes in the central area of the brain, which affect movement, mood, and thinking skills.

• Lewy Body Dementia
  • The second most common type of dementia is caused by the degeneration and death of nerve cells in the brain. It stems from an abnormal buildup of proteins (or Lewy bodies) and affects regions of the brain associated with thinking, memory, and movement. Because of the problems it causes with motor skills, LBD is linked with Parkinson’s disease.
  • There are no medical tests that can diagnose Lewy body dementia (LBD) with 100% accuracy. Specialists, including neurologists, geriatric psychiatrists, neuropsychologists, and geriatricians, make the diagnosis of probable LBD based on combined results of tests and patient symptoms. Your healthcare provider will perform a thorough neurological and physical examination.
  • Currently, there is no cure for Lewy body dementia (LBD). Medications and nonmedical therapies, like physical, occupational, and speech therapies, manage symptoms as much as possible.

It is critical for people with dementia and their families to receive information, care, and support as early as possible. To help family members and healthcare professionals recognize warning signs of Alzheimer’s disease, the Alzheimer’s Association developed a checklist of common symptoms:

• Memory loss
  • One of the most common early signs of dementia is forgetting recently learned information. While it’s normal to forget appointments, names, or telephone numbers, those with dementia will forget such things more often and not remember them later.

• Daily tasks are a challenge
  • People with Alzheimer’s often find it hard to complete daily tasks. Sometimes they may have trouble driving to a familiar location, organizing a grocery list, or remembering the rules of a favorite game.

• Trouble planning and problem-solving
  • Some people living with dementia may experience changes in their ability to develop and follow a plan or work with numbers. They may have difficulty concentrating and take much longer to do things.

• Times and places are confusing
  • It’s normal to sometimes forget the day of the week or where you’re going. People living with Alzheimer’s can become lost on their own streets, forget where they are and how they got there, and not know how to return home.

• Poor or decreased judgment
  • Individuals may experience changes in judgment or decision-making. Individuals with dementia often show poor judgment about money, giving away large sums to telemarketers or paying for home repairs or products they don’t need.

• Trouble understanding visual images and spatial relationships
  • Visual information can be difficult for a person with dementia. It can be hard to read distances or work out the differences between colors. Someone who usually drives or cycles may start to find these activities challenging. They might get lost traveling to familiar locations.

• Problems with speaking or writing
  • People living with Alzheimer’s may have trouble following or joining a conversation. They may stop in the middle of a conversation, have no idea how to continue, or they may repeat themselves. They may struggle with vocabulary, naming a familiar object, or using the wrong name.

• Misplacing things and losing the ability to retrace steps
  • Anyone can temporarily misplace a wallet or key. They may lose things and be unable to go back over their steps to find them again. He or she may accuse others of stealing, especially as the disease progresses.

• Changes in mood or personality
  • Everyone can become sad or moody from time to time. Someone with Alzheimer’s disease can show rapid mood swings–from calm to tears to anger–for no distinct reason.

• Withdrawal from work or social activities
  • A person living with Alzheimer’s disease may experience changes in the ability to hold or follow a conversation. As a result, he or she may withdraw from hobbies, social activities, or other engagements.

Alzheimer’s disease is caused by changes in the brain. Scientists have learned more about the condition; they’ve found clues about where symptoms come from and who’s at risk.

Although the causes of Alzheimer’s disease are not yet fully understood, they include a combination of:

• Aging
  • Older age does not cause Alzheimer’s, but it is an important known risk factor for the disease. However, age-related changes in the brain, like shrinking, inflammation, blood and vessel damage, and breakdown of energy within cells, may harm neurons and affect other brain cells.

• Genetics
  • Many people worry about developing Alzheimer’s disease, especially if a family member has had it. The genes you inherit from your parents can contribute to your risk of developing Alzheimer’s disease, although the actual increase in risk is small. Having a family history of the disease does not surely mean you’ll have it, too. It may mean you are more likely to develop it.

• Health, environmental, and lifestyle factors
  • Research suggests that a host of factors beyond genetics may play a role in the development and course of Alzheimer’s disease. There is a great deal of interest, for example, in the relationship between cognitive decline and vascular conditions such as heart disease, stroke, and high blood pressure, as well as metabolic conditions like diabetes and obesity.

People with Alzheimer’s vary in how they experience the disease. It may develop at different ages in different people, and symptoms may be worse for some than they are for others.

There are 5 stages of Alzheimer’s disease, and these stages can help you understand what may happen as the disease progresses.

Stage 1 – No Impairment

During this stage, Alzheimer’s is not detectable, and no memory problems or other symptoms of dementia are evident.

Stage 2 – Mild Cognitive Impairment

In the mild cognitive impairment stage, a person has developed mild changes in the ability to think and remember. During stage 2, increased forgetfulness and decreased performance are likely to be noticed by the family members.

People with mild cognitive impairment may also have trouble judging how much time is needed for a task or have difficulty correctly judging the number or sequence of steps needed to complete a task. Their ability to multi-task and make sound decisions can also become harder.

Stage 3 – Mild Dementia – due to Alzheimer’s disease

Stage three comprises what is often described as mid-stage dementia. This is when it becomes clear to family and doctors that a person is having significant trouble with memory and the thinking impacts their daily function. During this period, the problems in cognitive reasoning that you noticed in stage 2 get more obvious, and new issues appear.

Stage 4 – Moderate Dementia

During the moderate dementia stage of Alzheimer’s disease, people grow more confused and forgetful and begin to need more help with daily activities and self-care.

Your loved one may start to lose track of where they are and what time it is. They may have trouble remembering their address, phone number, or where they went to school.

They could get confused about what kind of clothes to wear for the day or season. You can help by laying out their clothing in the morning. It can help them dress by themselves and keep a sense of independence.

Stage 5 – Severe Dementia

During the final stage of the disease, dementia symptoms are severe. Because the disease is a terminal illness, people in this stage are nearing death. A person can lose their ability to communicate or respond to their environment. While they may still be able to utter words or phrases, they have no insight into their condition and need assistance with all activities of daily living.

When someone nears the end of their life, hospice care may be a good option. Hospice care can happen anywhere, and it’s a team approach that focuses on comfort, pain management, other medical needs, emotional concerns, and spiritual support (if desired) for the person and their family.

There are factors that can put you at risk for Alzheimer’s. Some you can’t avoid, and some that are within your control.

• Age
  • The risk of getting dementia nearly doubles every five years after you reach age 65.

• Family history and genetics
  • People with a family history of Alzheimer’s are thought to have a higher risk than those without that family history.

• Heart problems
  • There seems to be a link between the brain and heart health. The risk of stroke and vascular dementia increases with the buildup of fats, cholesterol, and other substances in and on the arteries of your heart.

• Diabetes
  • Diabetes can damage blood vessels in the brain, increasing the risk of vascular dementia.

• Smoking
  • Some studies suggest that people who smoke have a higher risk of dementia. One reason for this may be that smokers have a higher risk of heart disease which, in turn, makes dementia more likely.

• Blood Pressure
  • High blood pressure has been shown to increase the risk of dementia.

To diagnose Alzheimer’s, a primary doctor, a doctor trained in brain conditions (neurologist), or a doctor trained to treat older adults (geriatrician) will review your symptoms, medical history, and medication history. They may interview someone who knows you well, such as a close friend or family member. Your doctor will also perform a physical examination.

During your appointment your doctor will evaluate:

• Whether you have impaired memory or thinking (cognitive) skills
• Whether you exhibit changes in personality or behaviors
• The degree of your memory or thinking impairment
• How your thinking problems affect your ability to function in daily life
• The cause of your symptoms

Doctors may order additional laboratory or brain-imaging tests or send you for detailed memory testing. These tests can provide doctors with useful information for the diagnosis, including ruling out other conditions that cause similar symptoms.

As we age, many of us will start to experience subtle changes in our bodies. These changes are part of the normal aging process and are nothing to be ashamed of. Below are some significant changes that are considered in our field as “normal” –

• Eyesight
  • Over time, the lenses in our eyes get less flexible, which can negatively affect our vision. You might find you need glasses or contacts to help you see. At present, macular degeneration is incurable but treatable.

• Hearing
  • It may be more difficult to hear tones and frequencies at extreme ends of the spectrum. Changes in tone and speech may also be harder to distinguish.

• Bones
  • Once we hit a certain age, the minerals in our bones start to disappear faster than we can replace them. This may lead to more fragile bones and could even cause you to get shorter.

• Weight
  • Your body weight may fluctuate. It will be different for everyone, but the general trend for most people is an increase in weight until middle age, where it remains relatively stable generally between the ages of 40-60 when it starts decreasing slightly.

• Metabolism
  • Our metabolism starts to slow down as we age. While this means we use less energy and need fewer calories, it could also mean medicines and alcohol are not processed as quickly. Talk to your doctor and determine if your medication needs to be adjusted.

• Dementia

Each person is different, and many people diagnosed with Alzheimer’s can live on their own during the early stages of the disease, especially if a family member or caregiver provides regular in-home care. However, there may come a time when your loved one needs more care than you feel you can provide at home.

Here are a few signs it may be time for memory care:

• Alzheimer’s, dementia, or another dementia-related condition diagnosis
  • Once a diagnosis is given, it’s time to begin having conversations about memory care. This is your best opportunity to begin visiting, touring, and exploring reputable, licensed memory care facilities in your area. Transitioning earlier allows your loved one to have a say in their future, which is extremely important. It also enables necessary adjustment time so they’re familiar with their surroundings. This allows for forming relationships and connections with staff, employees, and other residents when they progress to the later stages of dementia.

• An unhealthy living environment
  • Pay attention if your loved one starts to abandon chores around the house, if there’s spoiled food in the fridge, or if lots of trash is piled up. That’s a sign that they are forgetting regular home maintenance. When a person can no longer upkeep their living space, it’s time for a memory care facility.

• Changes in behaviors
  • The primary indicators to look for a change in your loved one’s behavior. A person living with a memory disorder might become anxious or irritated. They may also forget to do daily tasks or upkeep their hygiene.

• The caregiver is overwhelmed
  • Taking care of a person with dementia or Alzheimer’s can be challenging. No matter if a family member is a caregiver or an in-home nurse, stress is inevitable. When the burden of overseeing the person becomes overwhelming, that’s a sign.

• A decline in overall health
  • As memory loss sets in, so do the abilities to drive a car, make grocery lists, prepare food, remember daily medications, or even remember to eat. Losing track of days and times can have a disastrous effect on the circadian rhythm, contributing to Sundowner’s syndrome, insomnia, and other sleep disorders that take a toll on one’s health and well-being.

Most memory care communities offer the same services found in an assisted living setting, such as:

• 24-hour care and supervision
• Housekeeping, personal laundry, and linen services
• Daily social and recreational activities such as fitness classes, organized games, escorted day trips, etc.
• Three daily meals, plus snacks and beverages throughout the day
• Some assistance with activities of daily living, including dressing, grooming and transferring
• In-house medical alerts
• Complimentary transportation
• Mobility assistance
• Medication management

Memory care is like assisted living in that it’s considered to be noninstitutional care, while nursing homes are institutional.  While health insurance doesn’t typically pay for memory care, long-term care insurance can cover nursing home living and palliative care, but the exact benefits depend on your specific policy.

Planning for the financial aspects of memory care can be easier with the help of a professional. A financial planner or estate planning attorney may be able to assist your family.

Alzheimer’s disease and other forms of dementia gradually diminish a person’s ability to communicate with others. Communicating with a loved one with Alzheimer’s disease or dementia requires patience and understanding. Below are some strategies that caregivers can use to be more successful at communicating with someone who has dementia:

• Listen respectfully and compassionately
  • Seeing a loved one struggle with paranoia, agitation, or repetitive actions (all signs of Alzheimer’s disease and dementia) can be upsetting. It’s best to not argue, disagree, or take it personally. Listen to their struggles and distract or redirect their focus on other activities if needed.

• Keep it simple
  • Ask one question or give one direction at a time, especially if your loved one does not remember how to perform daily tasks. Speak slowly and clearly.

• Stay positive
  • Dementia has its ups and downs. There will be good days and bad days. Do not use offensive language or negative statements, even if your loved one has done so, or you feel frustrated. Avoid arguing, be patient, and offer reassurance.

It’s not an easy conversation to have when someone you love received a recent Alzheimer’s diagnosis. It’s natural that the person may be defensive, angry, or even in denial that anything is wrong.  As a caregiver, you might become uncomfortable around your loved one’s privacy and need to talk to someone about the diagnosis and how your role will change as a caregiver.

There are strategies that caregivers or families can use to share the initial news of the diagnosis. The doctor or specialist, assessment team, or members of the family may talk to the person about the diagnosis, either individually or as a group.  Planning about the best way to share the diagnosis will make it easier.

Here are some considerations that will be helpful when talking with a person about their diagnosis:

• Don’t put off the conversation
  It’s important to have a talk about Alzheimer’s symptoms and plan for care as early as possible – even before a family member exhibits signs of the disease. The sooner people get medical advice about potential Alzheimer’s symptoms, the better.
• Pick a comfortable time and setting
  If you do sit down to talk to a loved one about possible signs of Alzheimer’s disease, choose a relaxed setting with few distractions. The right time and will vary for different people, but if you know the person well, you may know what will work best for them.
• Keep trying no matter how much pushback you get
  Discussing Alzheimer’s is a sensitive subject, and often people don’t want to recognize they may be exhibiting signs of dementia. They can be defensive and fearful, and making progress can take plenty of patience.
• Get family and healthcare providers involved
  If you’re having difficulty communicating with a loved one about Alzheimer’s, see if another family member or a close friend might be willing to try. If signs of early-stage Alzheimer’s are apparent, it’s also important to get the individual to see a doctor right away for a comprehensive evaluation.

A dementia caregiver is a skilled professional trained to recognize the symptoms of dementia. A dementia caregiver provides ongoing, quality care for a senior suffering from dementia. General responsibilities include:

• Maintaining their safety
  • Among the many caregiver duties, ensuring the client’s safety is a high priority. Some Alzheimer’s patients tend to wander from their homes, so caregivers should keep a watchful eye on their clients. Make sure doors are locked and neighbors are aware of the client’s habits. Other caregiver responsibilities include making sure the home is safe (childproof locks on cabinets and doors, closely monitoring the use of kitchenware and the stove, keeping medicine locked up, etc.)

• Medication reminders
  • A physician may prescribe medications that temporarily improve dementia symptoms. Seniors who are prescribed medications should be careful to take the right doses at the right time. Dementia caregivers are essential in reminding care recipients to take the right pills and to be on schedule.

• Routines
  • Dementia patients thrive best with daily routines; therefore, it’s important to stick to a schedule. Patterns in everyday life help seniors know what to expect and help to continue achieving some things on their own. Dementia caregivers should establish set times for meals, bathing, and grooming.

• Prevent wandering
  • Individuals with dementia are prone to wandering, so caregivers help ensure they get from place to place safely.

• Be calm and patient
  • When working with Alzheimer’s patients, it’s important to be cool, calm, and collected while performing caregiver duties. Seniors with Alzheimer’s sometimes have days where they’re disassociated from the present. It’s important to be patient and understanding during these times to avoid agitating the client further.

• Getting your loved one’s health, legal, and financial affairs in order
  • If possible, include them in the planning while they can still make discussions. Later, you will need to take over managing their finances and paying their bills.

• Miscellaneous tasks
  • Doing housework and cooking
  • Providing company and emotional support
  • Arranging medical care and making health decisions
  • Evaluating their house and making sure it’s safe for their needs

People with dementia are likely to have difficulty remembering what medications to take when to take them, and whether they have already taken their doses for the day. This makes the role of a caregiver even more important.

A loved one may take medicines to treat the disease itself, mood or behavior changes, and other medical conditions. To help caregivers of seniors get a better handle and understanding of Alzheimer’s disease and dementia, the following may be valuable information about managing medications for someone with Alzheimer’s disease:

• Create a medication list
  • It’s best to fully account for every medication being taken by the person with dementia. Create a list that includes prescription drugs, over-the-counter drugs, and any herbal or nutritional supplements. A medication list serves three purposes:
    • It allows a patient or caregiver to see all the medications the person is taking at-a-glance.
    • It provides a place to note any medication issues or side effects so that you can talk about it with their provider.
    • It shows a doctor or pharmacist the full range of medications, so they spot potential drug interactions.

• Daily usage reminders
  • There are many ways to create medication reminders. Some potential options are:
    • Pill reminder app: If you use your smartphone frequently, you can download one of the many pill reminder apps that are available. They will guide you through the alarm-setting process.
    • Add it to your calendar or planner: Add your medication information to calendars or planners if you use them.
    • Set an alarm: Set alarms for the appropriate times on your phone, tablet, or computer.

• Safe storage and organization
  • People with dementia can often forget to take their pills. They can also forget that they have already taken their medication, which could lead them to take a double dose. Proper organization and storage of medication can help prevent these incidents. The safest storage place is usually a locked box or cabinet that can only be accessed by family members or the caretaker. You may need a second lockbox for medications that have to be refrigerated.

Medical decisions to consider when planning includes:

Health care planning

For health care planning, an advance directive communicates a person’s wishes ahead of time. Doctors and other providers follow these directives for your medical treatment. Two main documents are part of an advance directive:

A living will let doctors know how you want to be treated if you are dying or permanently unconscious and cannot make your own decisions about emergency treatment.

A durable power of attorney for health care names someone as a “proxy” to make medical decisions for you when you are not able.

A do not intubate (DNI) order, which lets medical staff in a hospital or nursing facility know that you do not want to be put on a breathing machine.

A does not resuscitate (DNR) order, which tells health care professionals not to perform CPR or other life-support procedures in case the heart or breathing stops.

Other types of medical orders, inform healthcare professionals about your preferences for life-sustaining and life-supporting treatment measures during a medical emergency. These have various names but are commonly called POLST (Physician Orders for Life-Sustaining Treatment) or MOLST (Medical Orders for Life-Sustaining Treatment) forms.

Organ and tissue donation allows healthy organs or other body parts from a person who has died to be transplanted into people who need them.

Brain donation for scientific and medical research, which helps researchers better understand how Alzheimer’s and related dementias affect the brain, and how they might be better treated and prevented.

Long-term care planning

As symptoms progress, long-term care may be needed. People diagnosed with Alzheimer’s or related dementia and their family members should begin planning for the possibility of long-term care as soon as possible. Long-term care can be provided within the home or at an outside facility.  When planning for long-term care, it may be helpful to think about:

• Where the person will live as they age and how their place of residence can best support their needs and safety
• What services are available in the community and how much they will cost
• How far in advance you need to plan so that the person can make important decisions while they are still capable

End-of-life planning

Currently, there is no cure for Alzheimer’s and related dementias. A person’s condition will gradually decline and result in death. That’s why it’s important to plan and make decisions for your health care early on. When planning end-of-life care, quality of life should be considered alongside care that may extend life.

Legal documents ensure that the wishes of the person with dementia are followed as the disease progresses. These documents make it possible for others to make decisions on behalf of the person when they no longer can do so themselves. Be mindful that laws can vary from one state to another. Below is an overview of documents needed for health care planning: