The Toll Of Alzheimer's: Understanding Its Effects On Caregivers And Family

When someone develops Alzheimer’s disease or other types of dementia, the responsibility of caring for them often falls on relatives. This can lead to intense feelings of stress due to the day-to-day challenges involved, particularly for informal caregivers who are not trained or experienced in managing them and who have other responsibilities to juggle simultaneously. Family caregivers often grapple with significant emotional as well as financial and even physical impacts, which may also be reflected in their own mental health. Below, we’ll explore some of the potential effects of Alzheimer’s on caregivers and family members and then suggest some ways to help manage them.

About Alzheimers and dementia

Dementia is a category of diseases that includes a variety of forms of cognitive deterioration, which usually but not exclusively affect older adults. Symptoms can vary from illness to illness but generally involve the progressive loss of memory, language, and problem-solving skills as well as other cognitive abilities over time due to brain degeneration. Alzheimer’s disease is the most common form of dementia and the seventh-leading cause of death for adults in the United States overall, since there’s currently no cure for this terminal illness.

Other forms of dementia, which can involve many similar symptoms to Alzheimer’s, include:

• Vascular dementia, resulting from strokes that lead to accumulating brain damage
• Dementia with Lewy bodies, caused by harmful protein deposits inside nerve cells
• Parkinson’s dementia, a type of Lewy body dementia that can be seen in individuals with Parkinson’s disease
• Frontotemporal dementia, caused by neurodegenerative diseases affecting specific brain regions

These different diseases may have somewhat different symptoms, but they all share an increasing breakdown of brain function, leading to marked changes in personality, behavior, and mental abilities. A person with dementia often requires increasing support and care as their condition progresses. Most forms of dementia currently have no cure and are often fatal.

Care needs for different stages of dementia

In the early stages of dementia, a person may only experience mild symptoms such as memory lapses, losing track of objects, or trouble finding their way around. They might also need help with planning or engaging in complex tasks. These manifestations don’t usually require a full-time caregiver; minor assistance with day-to-day life may suffice.

However, as cognitive function continues to decline, it may be increasingly unsafe to leave a person with Alzheimer’s or some other forms of dementia alone. They may wander and get lost or forget to turn off appliances. The danger of harmful accidents may increase as they lose memory capacity, problem-solving abilities, and awareness of dangers. Conditions like frontotemporal dementia in particular may also manifest as impulsive, irresponsible, and risky decision-making when a person is left alone. 

In the later stages of Alzheimer’s disease and other types of dementia, an individual may be unable to perform basic tasks like dressing or feeding themselves. At the same time, their awareness and recognition of themselves, their surroundings, and their loved ones can be severely limited, which may lead them to resist help and direction from caregivers. Personality changes like paranoia and irritability can also take place. By this stage, an Alzheimer’s patient may come to require round-the-clock care. 

Who provides care for people with Alzheimer’s and dementia?

In many cases, dementia caregivers aren’t medical or social work professionals with specialized training. Instead, they're often the people closest to the affected individual, such as spouses, children, or other relatives. In fact, a 2022 survey found that 78% of caregivers for Alzheimer’s patients in the US are family members. Most are between ages 32 and 47, though a substantial fraction are older adults themselves. It’s also worth noting that the responsibility of care for those with Alzheimer’s often falls unequally among genders. The Alzheimer’s Association reports that roughly two-thirds of dementia caregivers identify as women.

Common effects of Alzheimer's on caregivers and family

Alzheimer’s care can take a significant toll on those providing it, manifesting in effects like:

Stress

Many caregivers tend to report high levels of mental stress, most commonly related to their worries about the worsening condition of the individual with this degenerative disease. Watching a loved one slowly lose their ability to understand and engage with the world can be extremely distressing.

Financial hardships

A person with Alzheimer’s will eventually lose the ability to support themselves, and their medical care and living expenses are often covered at least in part by friends and family members. At the same time, the demands of caregiving may require loved ones to reduce their work hours or take leaves of absence, further reducing their financial resources. 

Fatigue

In addition to being mentally stressful, caring for dementia patients can be physically tiring, and caregivers tend to get less sleep than others in their age groups. In fact, it’s reported that around 76% have trouble getting sufficient sleep—perhaps in part because depression and anxiety, also common in caregivers, can impact sleeping habits.

Depression

As recent research suggests, the prevalence of depression among caregivers for individuals with dementia is higher than in the general population.

Anxiety

Anxiety is another mental health condition that may be caused or exacerbated by the stress of Alzheimer’s care.

Strained relationships

Individuals with dementia often undergo personality changes—such as increased hostility or irritability—that can wear down the health of their relationship with their caregivers. As a result, caregivers may also experience frustration which could lead to guilt, which can be difficult to manage. There may also be conflicts with other family members, especially if care duties are shared unequally or if there’s disagreement about care decisions.

Physical health conditions

Many caregivers of people with dementia may feel like they’re too busy to prioritize their own health. Combined with the stress and fatigue that typically come with these responsibilities, this can place Alzheimer’s caregivers—particularly those who are considered “highly strained caregivers”—at an increased risk of physical illness.

Tips for reducing the negative impacts of Alzheimer's care

It may not always be possible to pay for professionals to handle the level of care your friend or family member with dementia requires. If you’re going to take on the task yourself, here are a few suggestions that may help you manage it more effectively.

Schedule for success

Caregivers are often advised to establish a familiar daily routine with dementia patients to help them feel less disoriented and upset. For example, you may want to set consistent times and procedures for meals, bathing, leisure activities, and taking medications. It’s also often helpful to avoid complicated activities during late afternoons and early evenings, when the “sundowning” effect may increase confusion and irritability in Alzheimer’s patients in particular.

Manage your expectations

By educating yourself early on about common symptoms of Alzheimer’s, you may be able to mentally prepare yourself for them. If you know beforehand to expect mood swings, stubbornness, paranoia, and a lack of recognition from your loved one, for example, it could be easier not to take these symptoms personally when they do arise.

Setting realistic expectations for yourself as a caregiver can be helpful, too. For instance, you might hope to ensure that the person you’re caring for remains happy, alert, and comfortable at all times, with a tidy home and a well-groomed appearance. This may not always be possible, though, both because of the disease’s progression and because of your own human limitations. That’s why it’s usually a good idea to acknowledge the challenges at hand and practice self-compassion, which means adopting a gentle, loving, and forgiving attitude toward yourself.

Prioritize your own physical well-being

A healthy lifestyle can go a long way toward moderating the potential negative effects of caregiving. For example, a 2016 review found that caregivers who incorporated physical activity into their daily routine—such as aerobic exercise, yoga, or even brief walks—demonstrated improvements in several mental and physical wellness measurements. 

Eating plenty of nutritious foods—including fruits, vegetables, nuts, legumes, and whole grains—can also help, as can adopting healthy sleep habits. Taking regular breaks, practicing meditation, and remaining socially engaged with other family and friends as much as possible could be beneficial as well. 

Take advantage of resources

Single-handedly caring for a loved one with Alzheimer’s or another form of dementia can be extremely difficult. That’s why leaning on social support and getting connected with other types of resources is usually recommended. Some examples to consider exploring include:

• In-person or virtual support groups
• 24/7 helplines for advice and support
• Online “toolboxes” of resources and information
• Places to share and read caregiver stories
• Locator tools for finding care help
• Tools for finding financial support

Talk to a therapist

Establishing a relationship with a mental health professional may also help you maintain your mental well-being despite the challenges you’re facing. A trained therapist can offer you a safe space to express your emotions and can support you in developing healthy coping strategies. Online therapy specifically may be an attractive option for receiving care if you’re feeling too overwhelmed with the demands of caregiving to make time to travel to and from therapy appointments. You can talk with an online therapist from anywhere you have an Internet connection, which can make scheduling much easier. Virtual sessions can also be comparatively more affordable than in-person sessions, which may be helpful for those experiencing financial strain in general and/or related to the care they provide.

Internet-enabled therapy can be effective for managing many mental health difficulties, and there’s emerging evidence that it could be helpful for those providing care to people with Alzheimer’s as well. For example, a 2022 study suggests that online cognitive behavioral therapy may help dementia caregivers reduce distress and better manage the symptoms of the people they support. Whether it’s pursued online or in person, mental health care from a trained professional could be valuable throughout the often-challenging experience of caregiving.