Everything You Need to Know About Dementia: 10 Common Questions Answered

Claire Samuels
By Claire SamuelsMarch 23, 2021
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Understanding and coping with a dementia diagnosis can be overwhelming, but you’re not alone. This group of conditions that affect the brain is common — nearly 50 million people worldwide have been diagnosed with a form of dementia, according to the World Health Organization.

Learn the causes and risk factors for Alzheimer’s disease and other types of dementia, as well as common signs and symptoms to track. Plus, find out what to expect after a diagnosis, as well as resources to help you care for your aging loved one.

1. What is dementia?

Dementia is a general term for a decline in cognitive function. People with dementia may have problems with memory, language, thinking, problem solving, and other functions that affect daily living.

Dementia isn’t a normal part of aging — it’s a group of disorders caused by abnormal brain changes. These changes lead to cognitive decline, which can be severe enough to impede independent life, affect behaviors, and alter feelings or relationships.

2. What causes dementia?

Diseases that damage brain cells cause dementia. This damage interferes with the cells’ ability to communicate effectively. Behavior, thoughts, and feelings can be affected by this disconnect.

Different regions of the brain are responsible for different functions. When brain cells in a particular region become damaged, that section of the brain can’t carry out its usual functions.

Alzheimer’s disease is the most common cause of dementia, accounting for up to 80% of cases in seniors. Alzheimer’s progressively damages brain cells in the hippocampus — the part of the brain responsible for memory and learning — hindering someone’s memory and their ability to think and carry out even basic daily living tasks in later stages of the disease. Alzheimer’s is caused by plaques and tangles in the brain that damage brain cells and the fibers that connect them.

3. Who’s at risk for dementia?

Older adults and people who have a family history of dementia are at increased risk. Age is the main risk factor for dementia and specifically Alzheimer’s disease. The risk of dementia increases with age and doubles every 10 years after age 60. In fact, nearly 85% of dementia cases occur in people 75 or older.

Family history is another key risk factor for dementia associated with Alzheimer’s disease and frontotemporal dementia. The risk doubles for people with a parent diagnosed with dementia before the age of 80.

However, researchers now believe other factors increase the risk of dementia, and there are things you can do to help influence them. These factors include:

4. What do I need to know about the early symptoms of dementia?

People with dementia rarely complain of memory loss or other problems associated with cognitive impairment. It’s much more common for family members and friends to notice signs and symptoms of dementia before their loved one does.

Learning to spot dementia symptoms early can make a huge difference in your aging relative’s future care. If you notice new or unusual behaviors, use your phone or a journal to keep track of patterns and severity. Schedule an appointment to discuss changes with your loved one’s physician.

Some warning signs of dementia include:

  • New difficulty speaking, writing, or recalling words.
  • Losing interest in favorite activities or hobbies.
  • Trouble keeping up with work, if they’re not yet retired.
  • Behavioral or personality changes.
  • Struggling to manage finances.
  • Losing track of time, or missing appointments and events.
  • Repeating questions, phrases, or behaviors.
  • Difficulty caring for a pet.
  • Agitation or stress.
  • Withdrawal from family and friends.

5. How is dementia diagnosed?

There isn’t a single test to conclusively diagnose cognitive decline, because we aren’t aware of everything to know about dementia. Since a medical diagnosis can take time, it’s important to reach out to a doctor as soon as you begin to notice common dementia symptoms.

Geriatricians take note of warning signs during regularly scheduled physical appointments and may perform a brief mental status exam. Some red flags that Alzheimer’s disease or another form of dementia may be a concern include:

  • Disheveled appearance or lack of hygiene.
  • Significant weight loss.
  • Agitation or unusual behavior.
  • Inability to carry on a conversation.
  • Unexplained bruising, cuts, or scrapes.

In the office, your parent’s doctor can perform a short, easily reproducible mental status exam. This provides a reliable baseline to track memory loss over time. The exercise measures short-term recall, spatial reasoning, and concentration, and may test a senior’s ability to:

  • Spell simple words backward.
  • Add and subtract basic equations.
  • Repeat words, then remember them later in the appointment.
  • Name objects properly.
  • Understand visual and spatial cues, like the distance and location of objects.
  • Draw a clock with evenly spaced numbers.

If the primary care doctor suspects memory problems after administering the test, they may refer your relative to a neurologist, radiologist, or another specialist for further analysis and a specific diagnosis of Alzheimer’s or another type of dementia.

Pursuing a dementia diagnosis can be scary — nobody wants to admit that cognitive decline may be affecting an aging loved one. But seeing a doctor as soon as possible is important to rule out other possibilities. Many treatable conditions, like thyroid issues, nutritional deficiencies, and infections can also cause memory loss. Plus, an official dementia diagnosis can be vital for future treatment and discussion of when it’s time for memory care.

6. What should I expect after a dementia diagnosis?

A dementia diagnosis is life-changing. And while doctors can provide some idea of what to expect, it’s important to remember that the disease affects everyone differently. Some older adults can live for years with mild-to-moderate dementia, but symptoms may progress more rapidly, leading to new behavioral concerns and changing care needs.

Accepting the diagnosis

Taking the time to come to terms with the diagnosis is important for both the person with dementia and their caregivers. You’ll be a major support system throughout the course of your loved one’s disease.

Open communication and patience can provide reassurance that the person with the disease doesn’t have to face their diagnosis alone, according to the Alzheimer’s Association. They recommend:

  • Emphasizing your loved one’s identity. Focus on their role as a mother, grandmother, gardener, artist, etc.
  • Encouraging your relative to seek support from a trusted professional, friend, or religious leader.
  • Connecting your loved one with other people experiencing dementia.

Planning for the future

Conversations about the future can be hard, but it’s better to have them sooner rather than later. Take the time to sit down as a family and discuss your loved one’s wishes. Look over this guide to elder care planning and family meetings to prepare for your conversation.

  • Ask your loved one what they value when it comes to future care. Many seniors would prefer to age at home, but dementia makes that difficult. If they choose to pursue memory care, are there any particular features or activities that interest them? Do they want to stay in town, or move to be closer to family?
  • Establish power of attorney to ensure your relative has appropriate representation as they age.
  • Talk through family responsibilities. Sibling conflicts can arise while caring for an elderly parent. Will one child handle finances while another schedules medical appointments? Who will help pay for or provide care?
  • Know the 7 stages of dementia, and what to expect from each.

Seeking support

You don’t have to go through the diagnosis alone, and neither does your loved one. As you support someone with dementia, it’s important to establish a network of trusted friends, family, or other contacts to help you avoid caregiver burnout.

  • Seek local or online support groups for dementia caregivers.
  • Set aside weekly “me time” for a relaxing activity you enjoy, whether it’s a bubble bath, a walk in the woods, or a tasty dessert.
  • Check out caregiver forums, like Aging Care for advice from others experiencing what you’re going through.
  • If you’re a sandwich generation caregiver who’s supporting children as well as an aging relative, talk through responsibilities with your relatives or spouse.

7. What are the 7 stages of dementia?

Dementia is progressive, meaning cognitive decline worsens over time. Health care providers use the Global Deterioration Scale (GDS), or the Reisberg Scale, to determine a timeline of dementia symptoms for elderly patients. Caregivers can review the GDS for insight into the progression between early, middle, and late-stage dementia.

The 7 stages of dementia begin with normal aging, and progress through severe cognitive decline. At stage 5, most people can’t survive without assistance. Dementia is most commonly diagnosed at stage 3.

  • Stage 1: No cognitive decline.
  • Stage 2: Age-associated memory impairment. Seniors may have difficulty remembering where they put their glasses, or the names of acquaintances, but can easily pass a clinical interview.
  • Stage 3: Mild cognitive impairment. Difficulty finding common destinations, poor work performance, and inability to recall words or names are signs of mild cognitive decline.
  • Stage 4: Mild dementia. Seniors may struggle to remember personal history, as well as current events. While maintaining finances or travel may become difficult, people with mild dementia will generally be able to recognize familiar people and perform most activities of daily living. Withdrawal and increased anxiety are common at this stage.
  • Stage 5: Moderate dementia. A patient may be unable to recall major aspects of their current lives, like a home address or grandchild’s name. They may experience disorientation with dates and times. While using the bathroom and eating are generally not a problem, other activities of daily living (ADLs) like selecting clothes, preparing meals, and grooming require assistance.
  • Stage 6: Moderately severe dementia. By stage 6, seniors often can’t remember the names of spouses or children, and have little awareness of recent personal history. Cognitive assessments like counting and word recall may be difficult, and incontinence and sleep disruption are common.
  • Stage 7: Severe dementia. Verbal abilities and basic motor skills are lost in the final stage of cognitive decline, as the brain becomes unable to tell the body what to do.
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8. How can I care for a loved one with dementia at home?

Nearly 90% of seniors want to age in place as long as possible, according to an AARP survey. Alzheimer’s disease and other forms of dementia can complicate these plans. Some older adults can age at home with dementia successfully for years or even decades, relying on family caregivers for support. However, it’s important to keep in mind that dementia is unpredictable, and care needs can change suddenly.

Before choosing to move an aging loved one into your home, carefully consider whether you can offer the resources necessary to keep them safe, stimulated, and healthy.

  • Home safety and modifications.Alzheimer’s safety risks are a major concern. While people with early-stage dementia may require only minor accommodations, like grab bars, low thresholds, and open layouts, those with later-stage dementia may need more significant — and expensive — adaptations. Automatic shut-off appliances, door and window alarms, and full-time supervision are often necessary as dementia progresses.
  • Stimulation and social interaction. Appropriate stimulation through activities, therapy, and daily interaction can reduce agitation and slow cognitive decline. People with early and middle-stage dementia benefit from memory activities, creative pursuits, and productive tasks that fit their ability levels. Seniors with late-stage dementia still need sensory stimulation from basic activities, sounds, lights, and textures.
  • Health care. While there’s currently no cure for dementia, a combination of medication, lifestyle adjustments, and mental health care can slow cognitive decline and improve your loved one’s quality of life.

9. What does memory care for dementia entail?

Memory care communities provide specialized housing and 24-hour care for seniors with Alzheimer’s disease and other forms of dementia. Many families choose memory care for their elderly loved ones, since communities are tailored to the specific needs of people experiencing cognitive decline. Key services and features that make memory care facilities different from other types of senior housing include round-the-clock care, specialized staff training, memory-enhancing therapies, a secure environment, and more.

Memory care addresses common dementia concerns

Memory care communities are equipped to help seniors experiencing challenges that often accompany mid-to-late-stage dementia. Staff are specially trained to address these common dementia behaviors while supporting residents’ safety and well-being.

  • Need for sensory stimulation. Memory care facilities offer occupational therapy, music therapy, art classes, aromatherapy, and more. For residents with late-stage dementia, light, sound, and texture activities offer stimulation.
  • Trouble navigating. People with dementia may have trouble finding common destinations, like dining rooms or activity areas. Memory care communities often have unique layouts and designs to reduce confusion and disorientation, as well as color-coded walls and images to help residents navigate.
  • Wandering. Facilities often have outdoor wandering gardens, as well as alarmed or concealed doors, to safely monitor potentially hazardous dementia wandering.
  • Loss of motor skills. Adaptive aids, like specially designed cups and utensils, help seniors maintain autonomy as long as possible.
  • Help with activities of daily living. Staff at memory care communities are trained to assist seniors with dementia with ADLs like bathing, dressing, and using the bathroom.
  • Memory loss. Reminiscence therapy uses sight, touch, taste, smell, and sound to help seniors with memory loss remember people, events, and places.

10. What are my other dementia care options?

As dementia progresses, your loved one’s care needs will likely change, making it more difficult to support them without professional help. Whether you need respite care for a short period of time, or are looking for permanent support or round-the-clock medical assistance, find a senior care option that best fits your family’s needs.

Respite care, or short-term care, is a temporary solution that allows family caregivers to spend time with relatives and friends, travel for work, or even take a much-needed vacation to prevent the potentially serious mental and physical health consequences of full-time dementia caregiving. Respite care may be offered by community centers, religious organizations, or senior living facilities, and generally lasts between one day and several weeks.

In-home care services don’t offer the same structure or amenities as memory care, but can be an ideal solution for seniors set on aging in place. In-home care agencies may offer different levels of support depending on your relative’s needs. Be sure the care aide has experience working with seniors with dementia, and have a list of your loved one’s symptoms available to share. Some benefits of in-home care for dementia include:

  • Companionship, which includes reading aloud, chatting, and in-home activities.
  • Transportation to appointments.
  • Assistance with activities of daily living like dressing, bathing, and grooming.
  • Meal preparation or delivery.
  • Cleaning and organizing.
  • Help with bills or financial management.

Nursing homes often cater to seniors with significant, debilitating conditions or health concerns. A doctor must prescribe this type of care, and will often require a skills assessment, as well as a physical examination. Nursing homes don’t provide the same resources as memory care, and aren’t designed specifically for seniors with dementia. Because of a higher resident-to-staff ratio, nursing homes aren’t ideal for aging adults with mild to moderate cognitive decline, unless they require round-the-clock health care as well.

Additional resources for seniors with dementia and their caregivers

Learn expert communication strategies to connect with your relative as their dementia progresses.

Look up help near you using the Alzheimer’s Association’s local resource database.

The Alzheimer’s and Related Dementias Education and Referral (ADEAR) Center offers information about research and clinical trials, as well as potential treatments and patient care. You can also reach ADEAR by phone at 1-800-438-4380.

For publications, educational material, and information about local services, you can reach The Alzheimer’s Foundation of America online or by phone at 1-866-232-8484.

Discuss your family’s needs and find out what type of care is best for your aging loved one with one of our free, local Senior Living Advisors.

Claire Samuels
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Claire Samuels

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