Living With Dementia Diagnosis: What's Your Loved One Going Through?

Dementia can have dozens of impacts on individuals, from their communication skills to their ability to carry out activities of daily living. The loved ones of people with dementia often witness some of the ways that dementia affects a person. However, they may wonder what it’s really like to live with the condition and what their loved one is going through. To understand, it may be helpful to explore the common challenges faced by people with various types of dementia and how their symptoms can affect them emotionally. 

Navigate complicated emotions about a loved one’s condition

Talk to a licensed counselor

Types of dementia: Alzheimer’s disease, vascular dementia, and others

According to researchers at Columbia University, nearly 10% of Americans over the age of 65 experience a form of dementia. However, when the topic of dementia comes up in conversation, some people might only think of Alzheimer’s. 

While Alzheimer’s is the most common type of dementia, there are several other causes. Vascular dementia is the second most common type, and this form of dementia tends to be related to reduced blood flow to the brain. Another type of dementia is Lewy body dementia, which researchers believe is associated with deposits of alpha-synuclein protein in the brain. A fourth type of dementia, frontotemporal dementia, is often related to tau and TDP-43 proteins in the brain’s frontal and temporal lobes. 

The specific type of dementia a person has may affect their symptoms. The following are symptoms that your loved one may be experiencing depending on the type of dementia they have. 

Alzheimer’s disease

Vascular dementia

The most common symptoms of vascular dementia can include: 

• A tendency to lose belongings
• Poor judgment
• Difficulty following instructions
• A tendency to forget past or upcoming events
• Difficulty finding the right word during conversations

Lewy body dementia

Lewy body dementia is associated with the following symptoms: 

• Disorganized thoughts
• Lack of concentration
• Muscular rigidness
• Reduced facial expression
• Sleep disturbances
• Hallucinations

Frontotemporal dementia

Frontotemporal lobe dementia, a rarer form of the condition, causes the following symptoms: 

• Trouble speaking or comprehending speech
• Impulsiveness
• Difficulty with planning
• Flat or excessive emotions
• Difficulty with balance
• Trembling hands

There are different types of frontotemporal dementia, so the symptoms may depend on the type that a person experiences. In some cases, there may be an overlap in symptoms between the various types of dementia.  

What is my loved one going through while living with dementia? 

While individuals may have heard of the above symptoms, it can be difficult to truly understand what a person with dementia is going through. Below are categories of symptoms and the various ways they can affect a person on a day-to-day basis.

Cognitive symptoms for people with dementia

For some people, one of the most challenging symptoms of dementia is memory loss. When a person begins to repeat questions, they may experience various challenges with social interaction. 

Pre-diagnosis, people in one’s social system may begin to wonder if they are being listened to during conversations. Post-diagnosis, they may start to behave slightly differently around the loved one with dementia. Toward the beginning of the disease, this change may bother a person with the condition, as they may believe that others are condescending toward them. They may also begin to have self-conscious thoughts, wondering if they’re repeating themselves, which may lead to isolation—a factor often related to depression. 

Cognitive decline can also lead to difficulty performing tasks that were once easy to carry out, such as paying bills. As a person begins to require assistance with these tasks, they may lose their sense of autonomy and wonder how they will cope in the future. Even if they have a strong support system, they may experience feelings of guilt for the help their loved ones offer. Those who do not have a support system while facing difficult decisions and navigating resources may struggle with loneliness and fear as they lose connection with their familiarity with themselves and their mind. 

Physical and health challenges for someone living with Alzheimer’s or dementia

With some types of dementia, people may experience physical symptoms that can cause emotional and behavioral challenges. For example, those who experience a hand tremor or problems with balance may experience moments of self-consciousness. Specifically, this challenge may arise when they pick up a cup of coffee in front of others. 

Individuals may also feel embarrassed if they suddenly lose their balance when guests are visiting. They may isolate themselves more to avoid moments of embarrassment in front of friends and family. Isolation, in turn, can affect their social life and possibly lead to symptoms of depression.  

Emotional challenges for someone living with dementia

While many forms of dementia typically start showing symptoms over the age of 65, some people experience early-onset dementia. In these cases, a person may experience the challenges of dementia in a different way. 

A person who develops early-onset dementia in their late 40s may be at the top of their career. Gradually losing facilities necessary for work and everyday functioning may become frustrating. Adding to the complexity of early-onset dementia is a possible tendency to compare oneself to peers, who are likely continuing with their social and professional lives as usual. A person with this type of dementia—as well as other types of dementia—may begin to have a sense of isolation. Isolation and loneliness can lead to feelings of despair and depression. 

According to the University of California, San Francisco, individuals with dementia and depression may be at risk of loneliness, which can lead to suicide. Family members might monitor their loved one’s mood and alert their physician about changes in affect and social engagement. Even if the symptoms don’t lead to despair, their loved one may benefit from speaking with a counselor about the emotional challenges of dementia, regardless of the age of onset.

If you are experiencing suicidal thoughts or urges, contact the National Suicide Prevention Lifeline at 988. Support is available 24/7.

Navigate complicated emotions about a loved one’s condition

Talk to a licensed counselor

Getting support as a loved one of someone with a dementia diagnosis: Mental health matters

In addition to helping your loved one get help for their symptoms, you may also benefit from connecting with a therapist. The family members of people with dementia often experience challenges they’ve never been through before, as coping with this situation can act as a unique stage that may happen only once in life. Some people may experience a sense of impending loss as they see their loved one gradually lose their cognitive function. They may also feel a mix of compassion and frustration that caregiving responsibilities have disrupted their lives. 

If you find yourself in a similar situation, it may help to discuss your emotions with a licensed counselor. If you can’t leave your family member or loved one alone for long due to their condition, you might find it more accessible to talk to a mental health professional through an online therapy platform like BetterHelp. Online therapy allows clients to communicate with a therapist through audio, video, or live chat at a time that works for them. In addition, clients can message their therapist for advice and tips at any time via in-app messaging, and they’ll respond as soon as they can. This feature may be helpful for those who experience emotional challenges related to a loved one’s condition in between therapy sessions.  

Research has demonstrated the effectiveness of online therapy for a number of conditions, including anxiety and depression. One study published in Psychiatric Services found that online cognitive-behavioral therapy (CBT), an evidence-based practice, was effective in treating anxiety and depression. These conditions can be common among people providing care for a person living with dementia.