Alzheimer’s Disease and Other Dementias

Being a caregiver for someone with Alzheimer’s disease or other dementias is challenging!

Some would say it’s the hardest, unpaid job on the planet, for which there is no training.  Learn more about dementias and caregiving tasks.

Be sure to check out our FAQ page for answers to common questions about Alzheimer’s and other dementias. 

Topic Quick Links – Click on a topic below to go to that area of the page.

• Dementia Caregiving
• Types of Dementia
• Diagnosis of Alzheimer’s and Dementias
• 10 Warning Signs of Alzheimer’s
• Stages of Alzheimer’s
• Alzheimer’s VS normal age-related changes
• Management of Alzheimer’s and other dementias
• Resources for Caregivers

Dementia Caregiving

Family members and friends provided more than $271 billion in unpaid care to people living with Alzheimer’s and other dementias in 2021. Three of the main reasons caregivers provide assistance to a person with Alzheimer’s or another dementia are:

1. the desire to keep a family member or friend at home (65%)
2. proximity to the person with dementia (48%)
3. the caregiver’s perceived obligation to the person with dementia (38%)

Caregivers often indicate love and a sense of duty and obligation when describing what motivates them to assume care responsibilities for a relative or friend living with dementia.

Caregiving is the act of attending to another person’s health needs and well-being which often includes providing assistance with one or more activities of daily living (ADLs), including bathing and dressing, as well as multiple instrumental activities of daily living (IADLs), such as paying bills, shopping and using transportation. Caregivers also provide emotional support to people with Alzheimer’s as well as communicating and coordinating care with other family members and health care providers, ensuring safety at home and elsewhere, and managing health conditions. 

Dementia caregiving tasks can include:

• Helping with instrumental activities of daily living (IADLs), such as household chores, shopping, preparing meals, providing transportation, arranging for doctor’s appointments, managing finances and legal affairs, and answering the telephone. Helping the person take medications correctly, either via reminders or direct administration of medications.
• Helping the person adhere to treatment recommendations for dementia or other medical conditions.
• Assisting with personal activities of daily living (ADLs), such as bathing, dressing, grooming and feeding and helping the person walk, transfer from bed to chair, use the toilet and manage incontinence.
• Managing behavioral symptoms of the disease such as aggressive behavior, wandering, depressive mood, agitation, anxiety, repetitive activity and nighttime disturbances.
• Finding and using support services such as support groups and adult day service programs.
• Making arrangements for paid in-home, nursing home or assisted living care.
• Hiring and supervising others who provide care.
• Assuming additional responsibilities that are not necessarily specific tasks, such as:
  • Providing overall management of getting through the day.
  • Addressing family issues related to caring for a relative with Alzheimer’s disease, including communication with other family members about care plans, decision-making and arrangements for respite for the main caregiver.
  • Managing other health conditions (i.e., “comorbidities”), such as arthritis, diabetes or cancer.
  • Providing emotional support and a sense of security.

Types of dementia

Dementia is an overall term for a particular group of symptoms. It’s not a specific illness but a syndrome or group of symptoms which causes memory problems affecting everyday life.

The characteristic symptoms of dementia are difficulties with memory, language, problem-solving and other thinking skills. Dementia has several causes, and presents as a gradual onset that gets progressively worse. While everyone who has Alzheimer’s disease has dementia, not everyone who has dementia has Alzheimer’s disease. 

• Alzheimer’s disease
  Alzheimer’s disease is an illness of the brain that causes nerve cells in the brain to die. It results in disrupted memory, thinking and functioning. This is the most common cause of dementia, accounting for 60 to 80 percent of cases. The trademark symptom is trouble remembering recent events, such as a conversation that occurred minutes or hours ago, while difficulty remembering more distant memories occurs later in the disease. Other concerns, like difficulty with walking or talking or personality changes, also come later. Family history is the most important risk factor. Having a first-degree relative with Alzheimer’s disease increases the risk of developing it by 10 to 30 percent. 
• Vascular dementia (Cerebrovascular Disease)
  About 10 percent of dementia cases are linked to strokes or other issues with blood flow to the brain. Diabetes, high blood pressure, and high cholesterol are also risk factors. Symptoms vary depending on the area and size of the brain impacted. The disease progresses in a step-wise fashion, meaning symptoms will suddenly get worse as the individual has more strokes or mini-strokes.
• Lewy body Disease (Dementia with Lewy bodies)
  Lewy bodies are abnormal aggregations (or clumps) of the protein alpha-synuclein in neurons. When they develop in a part of the brain called the cortex, dementia can result. In addition to more typical symptoms like memory loss, people with this form of dementia may have movement or balance problems like stiffness or trembling. Many people also experience changes in alertness, including daytime sleepiness, confusion or staring spells. They may also have trouble sleeping at night or may experience visual hallucinations, such as seeing people, objects, or shapes that are not actually there.
• Frontotemporal lobar degeneration (FTLD)
  This type of dementia most often leads to changes in personality and behavior because of the part of the brain it affects. People with this condition may embarrass themselves or behave inappropriately. For instance, a previously cautious person may make offensive comments and neglect responsibilities at home or work. There may also be problems with language skills like speaking or understanding.
• Parkinson’s disease (PD)
  In PD, clumps of the protein alpha-synuclein appear in an area deep in the brain called the substantia nigra. These clumps are thought to cause degeneration of the nerve cells that produce dopamine.25 As PD progresses, alpha-synuclein can also accumulate in the cortex of the brain. Dementia may result. Problems with movement (slowness, rigidity, tremor and changes in gait) are common symptoms of PD. Cognitive symptoms develop later in the disease, years after movement symptoms.
• Creutzfelkt-Jakob disease
  This type of dementia causes a decline in thinking and reasoning, as well as involuntary muscle movements, confusion, difficulty walking and mood changes. Getting worse unusually fast, this type of dementia is caused when prion protein in the brain folds into an abnormal shape that destroys brain cells. 
• Mixed dementia
  Sometimes more than one type of dementia is present in the brain, especially in people aged 80 and older. For example, a person may have Alzheimer’s disease and vascular dementia. It is not always obvious that a person has mixed dementia, since the symptoms of one type of dementia may be most prominent or may overlap with symptoms of another type. Disease progression may be faster than with one kind of dementia.

Less common forms of dementia

• Hippocampal Sclerosis (HS)
• Huntington’s Disease
• Korsakoff Syndrome
• Normal Pressure Hydrocephalus
• Posterior Cortical Atrophy

Brain Conditions

Besides Alzheimer’s and dementia, there are several other brain conditions that can cause problems with thinking, memory, and behavior. 

• Mild cognitive impairment (MCI)
  An early stage of memory loss or other cognitive ability loss (such as language or visual/spatial perception) in individuals who maintain the ability to independently perform most activities of daily living. This is often the first diagnosis given by primary care doctors who may not do rigorous testing at that point.

• Chronic traumatic encephalopathy (CTE)
  A progressive and fatal brain disease associated with repeated traumatic brain injuries (TBIs), including concussions and repeated blows to the head. It is also associated with the development of dementia. Studies have shown that people who experience TBI in early to midlife are two to four times more at risk of developing dementia in late life. CTE is being studied in professional athletes, primarily football players.

• Traumatic brain injury (TBI)
  Injuries from an impact to the head that disrupts normal brain function. Traumatic brain injury may affect a long-term cognitive abilities, including learning and thinking skills, reduced ability to function, and changes in emotional health. Falls are the most common cause of traumatic brain injury. 

Diagnosis of Alzheimer’s

Diagnosis of dementia or Alzheimer’s is based on a range of tests:

• A complete medical history includes information about the person’s general health, past medical problems, and any difficulties the person has carrying out daily activities.
• Medical tests – such as tests of blood, urine, or spinal fluid – help the doctor find other possible diseases causing the symptoms.
• Neuropsychological tests measure memory, problem solving, attention, counting, and language.
• Brain scans allow the doctor to look at a picture of the brain to see if anything does not look normal.
• Visit the Alzheimer’s Association to learn about: Diagnostic Criteria and Guidelines for Alzheimer’s

10 warning signs of Alzheimer’s disease

1. Memory loss 
2. Difficulty performing familiar tasks
3. Problems with language
4. Disorientation to time and place
5. Poor or decreased judgment
6. Problems with abstract thinking
7. Misplacing things
8. Changes in mood or behavior
9. Changes in personality
10. Loss of initiative

Stages of Alzheimer’s

The progression of Alzheimer’s disease from brain changes that are unnoticeable to the person affected to brain changes that cause problems with memory and, eventually, physical disability is called the Alzheimer’s disease continuum. On this continuum, there are three broad phases: preclinical Alzheimer’s disease, mild cognitive impairment (MCI) due to Alzheimer’s disease and dementia due to Alzheimer’s disease, also called Alzheimer’s dementia.

The Alzheimer’s dementia phase is further broken down into mild, moderate and severe dementia.

Stage 1 – Mild

• Often looks and acts normal
• Short-term memory fades, making it difficult to learn new things
• Speech becomes slightly impaired
• Hygiene can be neglected, and judgment hindered
• Minor personality changes
• Emotional response unpredictable and exaggerated
• “Sundown Syndrome” of late afternoon or early evening may include agitation, confusion, or restlessness can occur at this stage or in the next (moderate) stage

Stage 2 – Moderate 

• Memory impairment is obvious
• Short-term memory vanishes and stories and actions are likely to be repeated over and over again
• Individual needs supervision as complex tasks become overwhelming and decision-making is impaired
• Sleep cycles are disrupted
• Poor coordination, agitation, wandering and pacing may emerge Contact local Alzheimer’s Associations about their Safe Return Program
• Behavior problems are more frequent with exaggerated moods, hostility and aggression

Stage 3 – Severe 

• Person needs help in basic activities of daily living, such as bathing, eating and toileting
• Fragments of memory remain
• Troublesome behaviors are less prevalent
• Individuals suffer acute confusion, hallucination, delusions, paranoia, physical rigidity and/or seizures

While we know the Alzheimer’s disease continuum starts with preclinical Alzheimer’s disease (no symptoms) and ends with severe Alzheimer’s dementia (severe symptoms), how long individuals spend in each part of the continuum varies. The length of each part of the continuum is influenced by age, genetics, biological sex and other factors

Alzheimer’s VS normal age-related changes

It is important to note that some individuals may have dementia-like symptoms without the progressive brain changes of Alzheimer’s or other degenerative brain diseases. Causes of dementia-like symptoms include depression, untreated sleep apnea, delirium, side effects of medications, Lyme disease, thyroid problems, certain vitamin deficiencies and excessive alcohol consumption. Unlike Alzheimer’s dementia and other dementias, these conditions often may be reversed with treatment.

Possible underlying causes of dementia-like symptoms:

• side effects of medication
• increased pressure in the brain
• vitamin deficiency
• thyroid hormone imbalance
• untreated sleep apnea
• confusion or delirium caused by Urinary Tract Infections

10 Signs of Alzheimer’s Dementia Compared With Typical Age-Related Changes

1. 1. Memory loss that disrupts daily life
      • Alzheimer’s:
        One of the most common signs of Alzheimer’s dementia, especially in the early stage, is forgetting recently learned information. Others include asking the same questions over and over, and increasingly needing to rely on memory aids (for example, reminder notes or electronic devices) or family members for things that used to be handled on one’s own.
      • Normal age-related changes:
        Sometimes forgetting names or appointments, but remembering them later.
   2. Challenges in planning or solving problems
      • Alzheimer’s:
        Some people experience changes in their ability to develop and follow a plan or work with numbers. They may have trouble following a familiar recipe or keeping track of monthly bills. They may have difficulty concentrating and take much longer to do things than they did before.
      • Normal age-related changes:
        Making occasional errors when managing finances or household bills.
   3. Difficulty completing familiar tasks
      • Alzheimer’s:
        People with Alzheimer’s often find it hard to complete daily tasks. Sometimes, people have trouble driving to a familiar location, organizing a grocery list or remembering the rules of a favorite game.
      • Normal age-related changes:
        Occasionally needing help to use microwave settings or record a television show.
   4. Confusion with time or place
      • Alzheimer’s:
        People living with Alzheimer’s can lose track of dates, seasons and the passage of time. They may have trouble understanding something if it is not happening immediately. Sometimes they forget where they are or how they got there.
      • Normal age-related changes:
        Getting confused about the day of the week but figuring it out later
   5. Trouble understanding visual images and spatial relationships
      • Alzheimer’s:
        For some people, having vision problems is a sign of Alzheimer’s. They may also have problems judging distance and determining color and contrast, causing issues with driving.
      • Normal age-related changes:
        Vision changes related to cataracts.
   6. New problems with words in speaking or writing
      • Alzheimer’s:
        People living with Alzheimer’s may have trouble following or joining a conversation. They may stop in the middle of a conversation and have no idea how to continue, or they may repeat themselves. They may struggle with vocabulary, have trouble naming a familiar object or use the wrong name (e.g., calling a watch a “hand clock”).
      • Normal age-related changes:
        Sometimes having trouble finding the right word.
   7. Misplacing things and losing the ability to retrace steps
      • Alzheimer’s:
        People living with Alzheimer’s may put things in unusual places. They may lose things and be unable to go back over their steps to find them. They may accuse others of stealing, especially as the disease progresses.
      • Normal age-related changes:
        Misplacing things from time to time and retracing steps to find them.
   8. Decreased or poor judgment
      • Alzheimer’s:
        Individuals may experience changes in judgment or decision-making. For example, they may use poor judgment when dealing with money or pay less attention to grooming or keeping themselves clean.
      • Normal age-related changes:
        Making a bad decision or mistake once in a while, such as neglecting to schedule an oil change for a car
   9. Withdrawal from work or social activities
      • Alzheimer’s:
        People living with Alzheimer’s disease may experience changes in the ability to hold or follow a conversation. As a result, they may withdraw from hobbies, social activities, or other engagements. They may have trouble keeping up with a favorite sports team or activity.
      • Normal age-related changes:
        Sometimes feeling uninterested in family and social obligations.
   10. Changes in mood, personality, and behavior
       • Alzheimer’s:
         The mood and personalities of people living with Alzheimer’s can change. They can become confused, suspicious, depressed, fearful or anxious. They may be easily upset at home, at work, with friends or when out of their comfort zones.
       • Normal age-related changes:
         Developing very specific ways of doing things and becoming irritable when a routine is disrupted.

Management of Alzheimer’s and other dementias

Studies have consistently shown that proactive management of Alzheimer’s and other dementias can improve the quality of life of affected individuals and their caregivers. Proactive management includes:

• Appropriate use of available treatment options.
• Effective management of coexisting conditions.
• Providing family caregivers with effective training in managing the day-to-day life of the care recipient.
• Coordination of care among physicians, other health care professionals and lay caregivers.
• Participation in activities that are meaningful to the individual with dementia and bring purpose to their life.
• Maintaining a sense of self identity and relationships with others.
• Having opportunities to connect with others living with dementia; support groups and supportive services are examples of such opportunities.
• Becoming educated about the disease.
• Planning for the future.

To learn more about Alzheimer’s disease, as well as practical information for living with Alzheimer’s and being a caregiver, visit alz.org. Also download the Alzheimer’s Associations’ comprehensive special report: 2022 Alzhemer’s Disease Facts and Figures / More than normal aging: Understanding Mild Cognitive Impairment

Resources for Caregivers

• Call 2-1-1 throughout Texas for information and access to health and human service information for all ages.
• Call 800-252-9240 to find local Texas Area Agency on Aging.
• Call 800-677-1116 – Elder Care Locator service to find help throughout the U.S.

Use resources such as Area Agency on Aging (AAA). Types of assistance provided by AAAs:

• Information and referral
• Caregiver education and training
• Caregiver respite
• Caregiver support coordination
• Case management
• Transportation assistance

Types of assistance available through AAAs for persons age 60 and older may include:

• Benefits counseling
• Ombudsman – advocacy for those who live in nursing homes and assisted living facilities
• Home-delivered meals
• Congregate meals
• Light housekeeping

Be sure to check out our Resource Directory, FAQ, and Educational Events Calendar for more great information! Permission is granted to duplicate any and all parts of this page to use in education programs supporting family members caring for elders.

Sources: Alzheimer’s Association, Centers for Disease Control and Prevention

Revised October 2022

 Print This Page

---

We hope this information is helpful to you in the important work you do as a family caregiver.
For more resources, subscribe to our free eNewsletter!