Dementia is a general term that describes an overall decline of cognitive ability that can present in several forms. It affects a person’s ability to remember, reason, plan and make decisions. Around 50 million people live with dementia worldwide, including 5.7 million in the United States.
Dementia is a progressive condition, so patients who develop it will need increasing levels of assistance over time. Ultimately, most people with dementia require round-the-clock care. In 2019, more than 16 million unpaid caregivers, including family members, provided 18.6 billion hours of care to people with dementia, with an estimated value near $244 billion. That’s in addition to the $305 billion in paid dementia care estimated for 2020.
If you’re concerned that you or someone you love might have dementia, the information that follows will help you to understand the condition and its symptoms.
What Is Dementia?
Dementia is not a single disease but rather a set of symptoms related to memory loss. There are many different diseases that cause dementia, the most common of which is Alzheimer’s disease. Experts estimate that 60% to 70% of dementia cases are due to Alzheimer’s.
Dementia is not part of normal aging. It results from changes in the brain that become worse over time, altering the way a person thinks and behaves.
Causes and Risk Factors
Age is the most common risk factor for dementia. Statistics show that the risk of Alzheimer’s disease doubles every five years of a person’s life after they reach age 65. It isn’t exclusively an older person’s disease, however; nine percent of people develop early-onset Alzheimer’s before age 65.
Family history also plays a role, especially in Alzheimer’s. There are now 19 known genes confirmed to contribute to late-onset Alzheimer’s disease and three that are genes linked to early-onset Alzheimer’s. Someone with an immediate family member who has Alzheimer’s is more likely to develop the disease, and people with multiple relatives with Alzheimer’s are even more likely to develop it.
People can reduce their risk of dementia by practicing good health habits like not smoking, getting regular exercise and maintaining healthy blood pressure. Good mental and social health habits, like playing brain games and having a strong support system, may also help reduce risk.
Symptoms of Dementia
The most common symptom of dementia is consistent and worsening memory loss. Someone with dementia may forget things like:
- The name of a family member or close friend
- How to get around a familiar neighborhood
- How to complete a familiar task (combing hair, showering, pouring cereal, etc.)
- What the day or season is
- Where they are and how they got there
Especially in the early stages of dementia, it’s easy to mistake these symptoms for normal aging. Memory loss due to dementia is more disabling, interfering with a person’s ability to maintain their daily activities. For example, a person with memory loss due to normal aging can often remember where a forgotten item is by retracing their steps. A person with dementia is less likely to track themselves back to a lost item because they’ve forgotten where they had recently been. Another example can be found in conversation: someone with natural age-related memory loss might forget a certain word, but someone with dementia would have a hard time maintaining a conversation.
The memory loss of dementia usually appears along with increasing confusion and disorientation, for example:
- Asking the same question repeatedly
- Trouble staying on-task
- Using strange names for familiar objects (for example, “mouth cleaner” for “toothbrush”)
- Losing track of a conversation
- Making unusually poor decisions (for example, wearing the wrong clothes for the weather)
Some people with dementia also experience personality and mental health changes. Common experiences include paranoia, agitation, depression and anxiety. Sometimes these symptoms appear on their own, and other times they’re responses to the frustration that arises with difficulty in functioning.
Symptoms of dementia are different for different people, as well as their underlying medical conditions. However, always a progression of memory loss and confusion are standard.
Stages and Progression
Most people who develop dementia will progress through three stages, plus a pre-dementia phase that includes mild cognitive decline.
Mild cognitive decline, especially in its early phases, is easy to mistake for normal aging. The person starts to forget names, misplace objects and struggle with concentration. As symptoms progress, loved ones start to notice and become concerned, but the person can generally still care for themselves. Someone with mild cognitive decline won’t qualify for a dementia diagnosis until they reach the early stage of the disease.
In early-stage dementia, a person begins to have more difficulty focusing and completing tasks. The person is usually aware that they’re having trouble, though this manifests differently in everyone. Some people withdraw from friends and family because they feel self-conscious about their symptoms, while others find themselves in denial and resist help.
The task for dementia care partners at this stage is to help the person maintain as much independence as possible while providing enough support to keep them safe and complete everyday tasks of living, such as:
- Managing finances
- Remembering appointments
- Keeping track of medication
- Planning a schedule
A person experiencing middle-stage dementia will start to have more trouble caring for themselves and need more help with daily living activities like eating, bathing, grooming and going to the bathroom
Communication also becomes more difficult during the middle stages of dementia. Damage to the brain leads the person to struggle more while following conversations, maintaining their train of thought and remembering the correct words to use. They need care partners who are patient and will make a point of speaking slowly and clearly, without being condescending or speaking to the person as though they were a child.
During the middle stage, dementia care partners may also notice more changes in behavior. Some people have anger outbursts or become more agitated. Some start to wander beyond the home and have trouble finding their way back.
There comes a point in the middle stages of dementia when a person is no longer safe without supervision. The safest place for many people at this point is in a residential dementia care community.
In the last phase of dementia, people lose the ability to do even basic tasks for themselves. They may forget to eat and drink, which means they’re at risk of dehydration if they don’t have someone monitoring their eating habits.
A person in late-stage dementia will probably also have trouble with using the bathroom. They might forget how to do it and need someone to guide them through the process. Incontinence may also occur, in which case the dementia care partner will need to incorporate absorbent products into the person’s routine.
In time, the person with late-stage dementia loses the ability to move and communicate. At that point, the person needs full-time attention to prevent issues like bed sores, infection and muscular atrophy.
Dementia Treatment and Care
There is no cure for dementia, but there are medications that can help control symptoms. In some cases, a kind of medication called a cholinesterase inhibitor can support some level of memory retention. Other medications can help with non-memory symptoms, including depression, agitation and sleep disturbances.
For the most part, however, dementia care is less about medication and more about helping the person navigate a world that becomes increasingly confusing and frightening. In the early stages, it’s about having someone there to coach the person through their day as necessary and keep them safe. Exercise and engaging activities can help keep the person physically strong and can be effective in maintaining function.
As the disease progresses, dementia care partners need to coach less and take over more. When the person can no longer move or communicate, the task is to keep them feeling comfortable, healthy, loved and protected.
Care for Different Types of Dementia
Alzheimer’s disease is the most common type of dementia, so there tends to be more support and guidance available for Alzheimer’s caregivers. Alzheimer’s tends to progress gradually. A person’s care needs can gradually increase over years, so it’s important to be aware of what’s happening and plan appropriately for the future.
Frontotemporal dementia tends to affect younger people, usually between the ages of 45 and 64. There are three basic types, each of which has a different set of initial symptoms. Some people start out having social and behavioral difficulties, losing the ability to behave in a socially appropriate way. Some people lose their ability with language, and others experience a slowing or weakening of movement. All three types of frontotemporal dementia are progressive, meaning that people need increasing help with daily activities.
Lewy Body Dementia
People with Lewy body dementia tend to experience more movement-related symptoms like stiffness, trembling and difficulty balancing. They may also have trouble with sleep and alertness, including insomnia and daytime fatigue, which may require sleep medication. Care partners need to be particularly attentive to physical safety, including fall prevention.
Approximately 10% of dementia cases are vascular, meaning that they’re caused by inhibited blood flow to the brain. People with vascular dementia are more likely to decline in noticeable stages, rather than gradually, so care needs will stable for a while but then increase quickly over a relatively short period.
In Spring Creek’s secure Valeo™ memory care neighborhood, every resident receives personalized support based on their unique experiences with dementia. Valeo is about helping every resident live life to the fullest and as independently as possible, getting just the right amount of support to stay safe, well and engaged.