What is Dementia Care?

What is Dementia Care

Dementia is cognitive decline. It’s not a specific disease, but the term for impairment. Dementia is clinically diagnosed by affecting brain functions. It may affect memory, language, behavior, thinking, and judgment. Dementia is often progressive but sometimes it’s treatable or reversible. Dementia has many symptoms.

What Are the Main Cognitive Changes in Dementia?

  • Memory loss
  • Trouble communicating or finding the “right” words
  • Difficulty with visual and spatial abilities
  • Trouble with making decisions, exercising good judgment, and problem-solving
  • Trouble with complex tasks
  • Confusion and disorientation
  • Difficulty with organization and planning
  • Loss of motor function and coordination

What Are the Main Psychological Changes in Dementia?

  • Anxiety/paranoia
  • Depression/apathy
  • Visual hallucinations
  • Personality changes
  • Aggression/agitation

What Causes Dementia?

The most common types of dementia don’t have a known cause. Scientists have hypotheses on why dementia occurs but nothing concrete. Other brain conditions and certain health conditions can cause reversible dementia. Some health conditions can even mimic dementia symptoms. These are often treatable and reversed when the condition has been treated or cured.

What are the 7 Stages of Dementia?

What are the 7 Stages of Dementia

Stage 1: Normal Behavior
In the earlier stages of dementia, symptoms may not be present or noticeable. While symptoms might not appear right away, over time, they can start to emerge. The only way it’ll become detectable is through an imaging test.

Stage 2: Very Mild changes
In this stage, you may start to notice small changes in yourself or a loved one. Objects might get easily lost, events might have been misremembered, or they may forget small things. In this stage, the difference in memory might be considered normal aging forgetfulness.

Stage 3: Mild Decline
This change becomes much more noticeable. You or your loved one may forget something that was just read, repeat questions because they can’t remember the answer, have difficulty making plans or organizing, or can’t remember the names of new people. This stage can last for several years.

Stage 4: Moderate Decline
During this stage, the issues from the previous stage become more pronounced with added issues. The symptoms of this stage start to bring considerable concern. The dementia sufferer may forget details about themselves, have trouble remembering important dates, forget what month or season it is, struggle to cook or order food, struggle to understand what they’re told, or struggle to take care of everyday tasks. This stage lasts around two years.

Stage 5: Moderately Severe Decline
This is a later stage of dementia. A person struggles to perform everyday tasks. They will need someone to care for them. Someone in this stage of dementia will need assistance. They may have the ability to use the bathroom on their own but struggle to dress themselves appropriately (wearing summer clothes in winter or inside out). Memory troubles become more prominent. They may not remember where they are, their phone number, or their address. This stage typically lasts around a year and a half.

Stage 6: Severe Decline
In this stage, a person will forget names but recognize faces, mistake someone for another person (their son for their father), and significant personality changes are noticed. They may have aggression for seemingly no reason, become incontinent, need help with washing and dressing, and suffer extreme confusion. This stage is considered the beginning of the last stages and lasts around two and a half years.

Stage 7: Very Severe Decline
Many people pass away before they reach this stage. It’s the final stage. A person will struggle to swallow, speak, and may become immobile. They’ll need 24/7 care and constant assistance from a loved one or medical professional to survive.

What Does Dementia Do to the Body?

Many people often focus on what dementia does to your mind but not how it affects you physically. Alzheimer’s affects the mind in the earlier stages but the later changes present physical symptoms. As time goes on you/loved one can expect to experience a loss of coordination, sleep disturbances, difficulty swallowing, uncontrollable bladder, shuffling or dragging feet, fatigue, and twitches or seizures. Over time, this makes it increasingly difficult to care for oneself.

What are Different Types of Dementia?

What are Different Types of Dementia

Alzheimer’s Dementia – Alzheimer’s is the most common type of dementia. It accounts for 60-80% of cases. Most people present at age 65 but some do have early on-set dementia. This type of dementia is the 6th leading cause of death in the US.

Symptoms of Alzheimer’s have difficulty learning new information, memory loss, confusion, behavioral changes, disorientation, difficulty speaking, swallowing, and walking. Alzheimer’s doesn’t have a cure but currently has one treatment. This drug treatment removes amyloid and reduces cognitive decline.

Learn more about Alzheimer’s Care.

Lewy Body Dementia – LBD is a brain disease that has an abnormal amount of the protein alpha-synuclein in the brain. These Lewy bodies affect chemicals in the brain. This type of dementia is one of the most common and affects more than one million people. It presents itself around age 50 and seemingly affects more men than women.

This type is often misdiagnosed. It has similar symptoms to other brain conditions and psychiatric disorders. LBD doesn’t have any known causes. The only known risk factors are age and certain health conditions like Parkinson’s.

Some symptoms of LBD include hallucinations, trouble concentrating, loss of thinking abilities, jerky movements, loss of coordination, tremors, weak voice, sleep disturbances, dizziness, fainting, apathy, and agitation. LBD doesn’t have a cure or preventions. It can be treated with medication, therapies (physical and others), and counseling.

Reversible Dementia – Some forms of dementia are caused by a health condition like hypo and hyperthyroidism, depression, subdural hematoma, Lyme’s disease, Cushing’s disease, and more. Depending on which condition you have, you can treat the issue and it will reverse dementia.

Some conditions aren’t curable but managed with therapies and medications. At the very least, the symptoms experienced during dementia will decrease or completely go away.

Vascular Dementia – Vascular dementia occurs when the body has a stroke or other conditions that damage blood vessels. This type of dementia has brain damage from impaired blood flow to the brain. Symptoms of this dementia can include confusion, trouble focusing and concentration, memory problems, apathy, loss of coordination, and sudden urge to urinate, or unable to control urination.

Treatment options come in the form of managing health conditions and risk factors. The decline can slow from lower blood pressure, reducing cholesterol, stopping smoking, limiting alcohol, and performing physical activity.

Frontotemporal Lobar Dementia – Frontotemporal dementia is a group of brain disorders that affect frontal and temporal lobes. The lobes of the brain shrink causing substances to build in the brain. These areas of the brain are responsible for behavior, language, and personality. It’s sometimes misdiagnosed as Alzheimer’s or a mental disorder. However, it’s responsible for 10-20% of dementia cases.

It first presents around the ages of 40-65. Symptoms include changes in hygiene, eating, and social behavior, apathy, compulsive behavior, loss of inhibition, trouble with language and speech, and motor-related problems like falling, tremors, and difficulty swallowing.

Treatment includes antidepressants, antipsychotics, and speech therapy.

Creutzfeldt-Jakob Dementia: It’s a rare disease that occurs in one in one million people each year. This dementia type has prion proteins that function abnormally. The cause isn’t known but scientists do know the protein folds and destroy brain cells leading to rapid cognitive decline.

There are three main types of Creutzfeldt-Jakob disease: sporadic, familial, and acquired. Sporadic Creutzfeldt-Jakob develops without cause and occurs in most cases. It first presents around the ages of 60-65.

Familial Creutzfeldt-Jakob is caused by changes in chromosome 20. It accounts for 10-15% of cases. It presents anywhere from ages 20-40. Acquired Creutzfeldt-Jakob disease occurs when exposure to an abnormal prion protein occurs. This can happen in certain medical procedures and mad cow disease.

Symptoms present differently for each person, but they include depression, mood swings, disorientation, memory problems, difficulty walking, jerky movements, hallucinations, and vision problems.

Treatment doesn’t cure the disease and often can only provide comfort. When someone with this disease gets diagnosed, they typically only live a year. Opiates and muscle relaxers are often prescribed.

Parkinson’s with Dementia: This type of dementia occurs in those who have Parkinson’s disease. The brain begins to change with Parkinson’s and starts to affect motor skills then mental functions. It presents as a decline in thinking and reasoning at first.

Studies on this dementia fund that 50-80% experience dementia. Generally, it appears within ten years of developing Parkinson’s. Symptoms include memory changes, trouble with concentration and decision-making, problems with vision, hallucinations, delusions, muffled speech, apathy, anxiety, and sleep disturbances.

Treatment for this type of dementia won’t stop the progression but helps manage symptoms. Medications, SSRIs, and Deep Brain Stimulation are common therapies.

Mixed Dementia: Mixed dementia is more common in those aged 75 or older. It refers to having more than one type of dementia simultaneously. The most common type of mixed dementia is Alzheimer’s and vascular dementia. In some cases, a person may have three types of dementia simultaneously.

Symptoms vary from person to person because of the mix. Often, a person will exhibit one type of dementia more than another. There’s no cure for dementia but medication and therapies can minimize symptoms.

Huntington’s Disease: Huntington’s disease is a rare, genetic condition that progressively degenerates the nerve cells in the brain. It can develop anytime but often appears aged 30s-40s. Symptoms vary from person to person. Many include movement disorders like jerking and difficulty swallowing, difficulty processing thoughts and new information, fatigue, social withdrawal, apathy, and lack of impulse control.

There’s no cure for Huntington’s disease but treatments exist. Treatments won’t slow the progression of the disease but make the symptoms easier to manage. Medications, physical therapy, occupational therapy, and lifestyle changes are all ways to make life more comfortable.

Normal Pressure Hydrocephalus: NPH is a brain disorder where cerebrospinal fluid accumulates in the brain’s ventricles. The brain’s ventricles enlarge, and the spinal fluid puts pressure on the brain. It causes difficulty walking, issues with memory and reasoning, and uncontrollable bowels.

It occurs in people aged 60-70 and it’s estimated 700,000 adults live with NPH. It’s often misdiagnosed as Parkinson’s or Alzheimer’s. For most cases, the cause is unknown. However, some cases have been caused by head injuries, tumors, brain conditions, or infection.

It’s sometimes treated with surgery and a shunt, but it doesn’t rid all symptoms and doesn’t always work.

Wernicke-Korsakoff Syndrome: This type is a degenerative brain disorder caused by a lack of vitamin B1. The first stage is Wernicke encephalitis and the later stage is Korsakoff syndrome. It’s often associated with alcohol use disorder, dietary restrictions, eating disorders, and chemotherapy effects. A vitamin B1 deficiency causes damage to the thalamus and hypothalamus.

Korsakoff syndrome develops after encephalitis goes away. Wernicke damages the lower parts of the brain, while Korsakoff damages areas of the brain dealing with memory. Symptoms include confusion, tremors, vision changes, loss of memory, inability to make new memories, confabulation, and hallucinations.

Other Conditions that Can Cause Dementia or Dementia-Like Symptoms

Argyrophilic Grain Disease: AGD accounts for 5% of all dementia cases. This disease is characterized by the presence of argyrophilic grains with derived appendages and pre-tangled neurons in the limbic system.

This type often isn’t diagnosed until an autopsy is performed. The cause isn’t known and appears to be sporadic. Clinical symptoms include episodic memory loss, mood and emotional imbalance, personality changes, behavioral changes, amnesia, delusions, dysphoria, and agitation.

Chronic Traumatic Encephalopathy: CTE is a rare and not well-understood form of dementia. It’s thought to be caused by frequent head traumas that cause brain degeneration. CTE isn’t often diagnosed until an autopsy is performed.

CTE doesn’t have a specific symptoms list due to discovery after death. However, those rare cases where a case has been proven in a live person have found cognitive, behavioral, mood, and motor changes mimicking dementia.

HIV-Associated Dementia: This type of dementia occurs when the HIV virus spreads to the brain. The greater the spread of the infection, the more symptoms of dementia present. Symptoms include loss of memory, encephalitis, cognitive impairment, difficulty speaking and concentrating, apathy, and loss of motor skills.

This type of dementia is treatable and less likely to occur when using HAART (highly active antiretroviral therapy). Typical treatment involves physical activity, antiretrovirals, lifestyle changes, and medication.

What is Dementia Care?

What are the dementia care options

Dementia care is specialized care that is designed to meet the needs and requirements of patients at various stages of dementia. From basic assistance with activities of daily living (ADLs) to 24/7 patient monitoring,  dementia care may involve different services and can be provided in different settings. Here are are the main dementia care options:

1. Assisted Living

Assisted Living is a long-term care option providing normal nurses and hired professionals to ensure that dementia patients are checked upon and their daily needs are met. In Assisted Living facilities, dementia patients live regular life, just with some extra help.

A dementia patient who is in early stages of dementia will be able to live successfully in “regular” assisted living, provided that wandering is not a problem. On the other hand, patients with more advanced dementia nay need to live in an assisted living community with locked dementia units to ensure their safety.

Benefits

  • Allows the individual to remain somewhat independent.
  • Allows for extra care when needed.
  • Typically, slightly less inexpensive than memory care facilities

Disadvantages

  • Typically not reimbursed by Medicare or standard health insurance policies
  • Units are not locked and therefore not appropriate for those with wandering behaviors

Memory Care Facility – Memory care facilities are designed to replicate a home environment but provide specialized care. Seniors gather for mealtimes around a table and specialized staff members are present in case they need assistance. These facilities will care for your loved one 24/7 with ADLs, and monitor wandering. Usually, these facilities have a strict policy on who can come in and out and are locked by a gate.

Social activities focus on reminiscing the past with other members of the facility. They may share photos, stories, music, or anything they have a special connection to. Your loved one will spend time in gardens too, which has been shown to be beneficial for those undergoing cognitive changes. The idea is to slow the progression of the disease.

Memory care facilities cost around $6,000 up to $24,000 per month. The costs vary based on location, facility, and what services or programs are needed.

Benefits

  • Typically uses fewer medications to manage the disease
  • Specialized and knowledgeable staff
  • Safer environment than other options
  • Provides progressive care

Disadvantages

  • Most expensive compared to other options
  • The locked environment may cause distress/remind them of lack of independence for your loved one

Skilled Nursing Facilities with Memory Care Units – Skilled nursing homes with memory units are more intensive than other facilities. They offer complete medical care 24/7 and house people short-term and long-term. All skilled nursing facilities provide ADLs, medical care, and sometimes social activities.

Each nurse will have a limited number of patients so they can give your loved one the personal attention and care they need. These facilities are specially designed to care for those with Alzheimer’s, dementia, and other complex medical conditions. The costs for these facilities range from $6,000 to around $11,000.

Benefits

  • One-on-one individual and personalized care
  • Licensed professionals to provide care
  • 24/7 ADLs care
  • Ideal for long-term stays

Disadvantages

  • More expensive than other options
  • Set visiting times

Dementia Daycare

Adult daycare for those with dementia or Alzheimer’s is ideal for those who choose at-home care or are cared for by a loved one. A daycare provides social activities and limited medical care to your loved one while you’re at work or need a break. It can benefit those who can’t afford full-time at-home care too.

These daycares offer a meal, group activities, fitness activities, and outings. Many of these daycares provide transportation to and from the facility too. Typically, these facilities cost around $1,500 a month and often offer options like sliding scales for low-income participants. Keep in mind these facilities aren’t for those who have progressed far into the disease where they can’t feed, dress, or don’t have mobility.

Benefits

  • Provides a break to caregivers
  • Allows for socialization
  • May offer special programs for Alzheimer and dementia sufferers
  • Can be cheaper than other alternatives

Disadvantages

  • Only available for early to mid-stage dementia sufferers

Dementia Care at Home (Dementia Home Care) – Home care agencies vary. You may have licensed professionals that assist in physical or occupational therapy, administer medications, run medical tests, monitor health status, or wound care.

On the other side, some care agencies can be privately hired and aren’t licensed. However, they assist with companionship, transportation, assistance with ADLs, meal prep, medication reminder, cleaning the home, or managing finances. Some may even live with their patient and provide 24/7 care.

The cost for both ranges but it’s typically around $5,000 per month. It depends on the level of care needed, hours worked, location, and state laws.

Benefits

  • Curb isolation
  • Maintain some form of independence for yourself/loved one
  • Allows you/your loved one to age in place

Disadvantages

  • Can get expensive depending on needs
  • Some home health care can’t provide medical attention/offer 24/7 care or ADLs

What are the Questions to Ask Dementia Care Providers?

When a loved one is diagnosed with dementia, you may start to panic, and your mind races. You’ll have many questions but sometimes your mind goes blank when you’re nervous, scared, or trying to process what you just heard. As you process the information, the idea of a care facility comes to mind. Maybe you or your loved one can’t age in place or don’t want to become a “burden” and decide it’s best. Before you decide on a place, there are some key questions you should ask any care provider.

  • What kind of medical staff do you have? If yes, how many? Are they 24/7?
  • What medical services are available on-site?
  • What are the staff-to-patient ratios for each shift?
  • How do you choose caregivers? Their qualifications?
  • What’s your philosophy on dementia care?
  • Does each client have an individual care plan?
  • What type of training does your staff undergo?
  • What type of accommodations are available?
  • What kind of safety measures are in place/do you use?
  • What types of therapies and activities are available?

What is Person-Centered Approach to Dementia Care?

Person-centered dementia care focuses on the individual instead of their illness. It considers each person’s needs, preferences, abilities, interests, and qualities. Person-centered care aims to bridge the gaps traditional treatment usually misses like their psychological and emotional needs.

What are the Interventions and Supportive Therapies Available for Dementia Patients?

There are many options dementia patients can take to treat it. The most common forms of treatment include medications, physical therapies, behavioral therapies, and other therapy like music, validation, and aromatherapy. Some therapies are considered treatments and others are considered rehabilitative.

Treatments typically involve proven therapies and most commonly include medications. They are given to help reduce or prevent symptoms of dementia. Rehabilitative therapies are often used to help relieve symptoms and slow the progression of the disease. In some cases, it may help to make muscles stronger to avoid apathy.

Rehabilitative

  • Cognitive rehabilitation
  • Physical activity
  • Occupational therapy
  • Music therapy
  • Pet therapy
  • Aromatherapy
  • Massage therapy
  • Art therapy
  • Validation therapy
  • Reality orientation
  • Multisensory stimulation
  • Reminiscence therapy
  • Cognitive stimulation therapy

Treatments

  • Behavioral management programs
  • Medications

Frequently Asked Questions

1. What does it feel like to have dementia?

Dementia suffers have various mood changes and behavior changes. It can often get scary or confusing for them. Each person will feel differently and not everyone will have the same symptoms. Some people hallucinate visually, have difficulty remembering places or people, and have general confusion.

A person might not understand how they arrived somewhere or why someone moved their things (nothing has been moved). They may also feel a lack of awareness of behaviors and moods, despite others telling them so. Many have no sense of fear and feel annoyed or angry for no apparent reason.

2. Why dementia is deadly?

Dementia is serious and fatal. At first, it presents as simple forgetfulness. As time goes on, it begins to deteriorate the brain cells and proteins that maintain human functioning. Eventually, a person can become immobile, unable to eat or swallow, or contract infections like pneumonia.

3. Is dementia treatable?

The symptoms of dementia are treatable. However, it’s not curable. Treatments include medications and therapies (physical and mental).

4. Does Medicaid cover dementia care?

Yes and no. It depends on the state you live in and your income level. Some states will cover full nursing home costs, while others will only cover a portion. Typically, Medicaid will help to pay for medications, home healthcare, and doctor’s visits. For eligibility, check with your state office.

5. What is selective dementia?

It’s not known why this phenomenon happens and it confuses many caregivers for dementia. However, dementia suffers can have selective memory. They may forget who their daughter-in-law is or their own son but may recognize a celebrity, their favorite movie, or first love.

6. What is BPSD in dementia?

BPSD refers to behavioral and psychological symptoms of dementia. It contains a range of behaviors and emotions like aggression, depression, irritability, disturbed perception, and aberrant motor behavior.

7. What to do when a parent with dementia refuses to help?

When a loved one refuses help, you may feel defeated. However, there are ways you can help them if they refuse help from professionals. For example, encourage them to eat healthier, create a medication and hygiene routine, and avoid pushing them to denial of their dementia. Offer solutions and support when they need it.

8. What professionals are involved in dementia care?

When you have dementia, you will see various medical professionals depending on what stage you’re in. Some of these professionals include neurologists, geriatricians, occupational therapists, physiotherapists, chiropodists,  speech therapists, audiologists, ophthalmologists, dieticians, home health aides, continence advisers, and general practitioners.