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Self-Care for Spouses Caring for a Partner with Alzheimer’s Disease

A caregiver can be anyone who helps an individual with various tasks of daily living, transportation to and from health appointments, and assisting someone with financial decisions.

While the most common type of caregiver people think about are paid healthcare professionals, friends, family members, and spouses can also be caregivers.

Being a caregiver for your spouse with Alzheimer’s disease can feel like the most appropriate decision and the only one you can think of because who can take better care of your partner than you?

The problem is when you, acting as a caregiver, experience caregiver burnout. When a person experiences this caregiver burnout, they start to live in a state of physical and mental exhaustion. Caregiver burnout is critical to avoid because you may start to develop changes in your own health and perception of your relationship with your partner.

This article will help you develop better-coping strategies and provides tips for caring for a loved one with Alzheimer’s disease.

How to cope when your spouse has Alzheimer’s disease

When it comes to having a spouse or partner that has Alzheimer’s disease, it is normal to feel like if you stop to take time for yourself, you are being selfish. Remembering to take time for yourself is also critical because you can’t expect to properly assist anyone if you are not in a good mindset.

Often, when you are acting as a caregiver for someone else, your own health gets placed on the back burner. When you can’t stop for yourself, you may find that your health conditions worsen, and you are suddenly physically unable to care for your spouse.

Consider the following Alzheimer’s disease caregiver tips to help you prepare for being a caregiver as well as help to better care for yourself so that you can care for your spouse.

Increase your physical activity. Find an activity that you will find enjoyable, such as walking or yoga. Start in little increments and gradually increase the amount of time and how many days you perform this activity. Physical activity will help relieve stress and comes packed with health benefits when done consistently.
Take up other people’s offers to help. Accepting other people’s offer to help can be difficult because you might feel like you don’t want to burden them; however, they are probably asking because they want to help! If someone asks how they can help, assign them a task and relieve yourself of that burden.
Connect with others. Find a community, either online or in-person, of others in similar situations to yours. Hearing others express frustrations you have as well can be a big reliever in knowing you are not alone.
Implement techniques to encourage relaxation. Learning relaxation techniques is incredibly beneficial to help you deal with those times when frustration is high. Relaxation techniques use skills like visualization and meditation, for example.
Empower yourself by staying knowledgeable about the disease. Remain current on all the latest information in the progression and treatment of Alzheimer’s disease. Follow your favorite organization on social media or join their mailing list to ensure you get the latest news.
Remember to plan for the future. Planning includes not only your future but your spouse with Alzheimer’s future as well. It can be difficult to think about, though it’s essential to prepare for the chance of you not being around to care for your spouse. Think about who and how you would want care provided to your partner. Start and even keep planning for your financial future. Remember to budget for unexpected bills.
Try to remain flexible. The person with Alzheimer’s disease needs will change over time. Sometimes a task they could do a couple of days ago has changed, and they can’t perform that same task. Remember to be fluid and not let frustration turn a situation into a bad one.
Take a break. Prevent yourself from getting overwhelmed. Stop when you must, and remember it’s ok if your house isn’t perfectly clean. What’s important is that you stop to care for yourself as well.

Different stages of Alzheimer’s disease can affect you as a spouse differently. So knowing and understanding your role as a caregiver in these stages is helpful to anticipate the amount of help you will need to provide to your spouse and the kind of help you may need yourself.

Care during the early stages

In the early stages, most people can function independently, and your role should be that of support. Your spouse will need you to be there as a companion and to help them make decisions that involve their (and your) future.

During this time, you and your partner can start planning for the future financially. Consider the costs that may occur in treatment, from medications to therapies. You and your partner can discuss care measures that will happen later on as the disease progresses. Consider whether you and your partner can afford an in-home caretaker or if it is more financially reasonable to consider more of an assisted living type facility.

Care during the middle stages

You may notice more behavior changes beginning to occur during the middle stages of Alzheimer’s disease. The person with Alzheimer’s disease will start to have difficulties with activities of daily living like bathing and dressing during the middle stages.

Your spouse may need a more structured routine to help cope with these new changes. It’s also important to stay flexible during this time because you might need to change that routine as the disease progresses and your spouse’s needs increase.

During this time, you have to remember to take time for yourself. The caregiver role you are now in can be very demanding and a considerable change from before.

Caregiving during the late stages

When a person is in the late stages of Alzheimer’s disease, their need for care is often high. They might have problems with eating and need meals cut up for them or even a specialized diet.

The person going through the late stages of Alzheimer’s disease will often need extensive care. Your partner may need full-time care, meaning they might need to be in a facility with healthcare professionals responding to their needs around the clock.

Signs of caregiver stress

Being a caregiver can have its burdens, and knowing what caregiver stress might look like is helpful. When you are focusing on someone else’s needs, it’s common not to notice your own, and unfortunately, when you go long enough and do not realize you’ve reached your limits, your health can become affected.

When you start to notice any of the following, it may be a sign that you are experiencing caregiver stress:

Difficulty concentrating
Frequent moments of sadness
The increased need for alcohol
You start to get irritated easily and quickly
Feeling tired even after a decent night’s sleep
Gaining weight quickly or even losing weight rapidly
Anger towards your spouse with Alzheimer’s disease
You haven’t connected with friends and family recently

When you start to notice any signs that you are experiencing caregiver stress, then you should reach out for help. This is the time to talk with other family members and enlist them in some of the care for your partner.

Respite care is something to consider. Respite care is when the caregiver will take some time off from their responsibilities in being a caregiver. Services are often offered from care either in the home or adult day care and sometimes can be provided by short-term nursing home care when needed.

While caring for a spouse with Alzheimer’s disease can be stressful, it is important to know that you are not alone. Ask family and friends for help when you need it. Reach out to community programs and resources for help when you need it. Take care of yourself so that you can better care for your loved one.

Key Takeaways

Caregivers can develop caregiver burnout and experience physical and mental exhaustion.
It is important to ask for help when you start developing signs of caregiver stress so your health doesn’t suffer.
Accept help from others when they offer it, and remember to take time out for yourself.
During the early stages of Alzheimer’s disease, plan for the future with your spouse to make arrangements.
Keep in mind that during the late stages of Alzheimer’s disease, the care needed by your spouse will be high and often around the clock.

Resources

Alzheimer’s Association. (n.d.). Early stage caregiving. https://www.alz.org/help-support/caregiving/stages-behaviors/early-stage

Eldercare Locator. (n.d.). Community Resource Finder. Administration for Community Living. https://www.communityresourcefinder.org/

MedlinePlus. (n.d.). Caregiver health. U.S. National Library of Medicine. https://medlineplus.gov/caregiverhealth.html

Mayo Clinic Staff. (2021, January 6). Caregiver stress: Tips for taking care of yourself. Mayo Clinic. https://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/caregiver-stress/art-20044784

WRITTEN BY:

Courtney Battaglia BSN, RN

Courtney Battaglia is a registered nurse with a bachelor’s degree from the University of Texas at Arlington. She has over 12 years of experience working directly with patients, many of whom experienced the effects of Alzheimer’s and dementia. Courtney is dedicated to providing resources for families and patients who are experiencing this diagnosis and continues to advocate daily for this population.

By combining her nursing knowledge with her passion for writing, Courtney strives to arm the public with the most accurate information for their health-related questions. While maintaining an active presence in delivering exceptional patient care, Courtney continues to promote and foster education to the public by breaking down recent research and news trends into easy-to-understand information.

Alzheimer’s Dementia: Early Signs and Screening

There is no single test that identifies Alzheimer’s disease, therefore delays in diagnosis often occur. This is problematic because Alzheimer’s is typically an extended illness, and the burden on families, caregivers, and the healthcare system is considerable. Shortening the time between disease onset and confirmation of the condition can ease the impact on a family’s resources.

Closing the gap requires awareness of the early signs of cognitive problems and the subsequent application of appropriate screening methods for dementia.

Signs and Symptoms

An initial sign of Alzheimer’s disease is trouble remembering new information to a degree that interferes with independent functioning. People with the condition will rely more and more on others to help them navigate things like conversation or event details, lost items, and retracing their steps. According to the Alzheimer’s Association, additional changes that warrant a medical and cognitive evaluation are:

Change in mood or personality
Withdrawal from usual activities
Decreased or poor judgment
New problems with words in speaking or writing
Trouble understanding visual images and spatial relationships
Confusion regarding time and place
Difficulty finishing familiar tasks
Limited planning and problem-solving abilities

caregiving family cognitive function

Mild Cognitive Impairment versus Dementia

Dementia is a syndrome characterized by a collection of mental, physical, and behavioral changes that present in a certain pattern that helps identify the type. Alzheimer’s disease is the most common form of dementia. Not all cognitive impairment results in Alzheimer’s, but those with the former are more likely to experience further decline. The National Institute on Aging reports that for those over age 65 with mild cognitive impairment (MCI), up to 20% develop dementia within a year’s time.

An important distinction between MCI and dementia is that those with the former issue are still functionally independent and able to successfully live alone. Here’s a snapshot of other basic differences between MCI and dementia.

Mild Cognitive Impairment

Losing things often
Stable behavior
More difficulty with word finding than people of same age

Dementia

Unable to retrace steps and find an item
Personality changes
Difficulty relaying information in a logical or clear way

Identifying and Managing Dementia

Primary care providers may be well-versed in dementia recognition and work-up while others are less exposed and aren’t as confident. Physicians, nurse practitioners, and physician assistants who see patients and families first, have to decipher between the nuances of MCI and dementia. They must also rule out other possible causes of memory loss and confusion like depression, infection, or vitamin deficiencies.

Specialists

Being able to engage with treatment and care solutions early on improves the quality of life for those affected and may also decrease misuse and overreliance on hospital-based resources. However, access to specialists to help confirm a dementia diagnosis and/or to co-manage the course of the illness may be limited. Such specialists – listed in the table below – often require a referral, which can be a barrier to timely follow-up.

Geriatricians – Primary care physicians with dedicated training in the care of older adults.

Geriatric psychiatrists – Physicians focused on mental health and behavioral conditions related to aging.

Neurologists – Specialists who diagnose and treat nervous system abnormalities including brain disorders like dementia.

Neuropsychologists – Mental health professionals with advanced training in psychology including memory testing.

Barriers to diagnosis

A history and physical by a medical provider is by far the most useful tool in tracking memory and behavioral changes over time. A clinician will evaluate overall health status which may illuminate factors that are contributing to cognitive problems. They will also order needed tests such as lab work or brain scans to further investigate underlying causes of memory impairment.

As outlined above, lack of access to an experienced medical provider and/or a neuro specialist can be barriers to a proper dementia assessment. Other reasons for a delay in diagnosis

include:

Subtle onset of signs and symptoms
Assumption that signs are a “normal” part of aging
Difficulty getting the person with dementia in for testing
Disease stigma and subsequent shielding of the person by loved ones

Cognitive screening tests

In reality, the confirmatory test for Alzheimer’s disease is a biopsy of brain tissue at the time of death. As this is obviously not possible for patients living with dementia, the best providers can do is perform testing that leads to a “probable” diagnosis.

The following are examples of validated cognitive screening tests used to begin the process.

Ascertain Dementia 8 (AD8) – An 8-item survey that identifies early cognitive changes by asking about memory, orientation, judgment, and function.

Mini-Cog – A brief but sensitive test applying word registration, word recall, and clock drawing to detect early dementia.

Mini-Mental State Exam (MMSE) – An eleven-question assessment of thinking, communication, understanding, and memory that determines mental status and cognitive function.

Montreal Cognitive Assessment (MoCA) – A multi-variable test (e.g. visuospatial abilities, short-term memory, executive function) that is highly sensitive for mild cognitive impairment.

Supportive testing

The Alzheimer’s Association identifies the below tests as building blocks toward confirmation of a dementia diagnosis:

FDA-approved digital cognitive assessment tools like the self-administered Computer Assessment of Mild Cognitive Impairment (CAMCI).
- Utility: Can be accessed remotely; provides automated, standardized results.
Brain imaging such as MRI, PET, or CT scans.
- Utility: Identifies abnormal brain tissue consistent with a type of dementia.
Genetic testing
- Utility: Provides opportunities for early identification and informed decision making for those at-risk.
Depression and anxiety screening
- Utility: Identification of treatable chemical imbalances and behavioral components that compound cognitive issues.

Conclusion

The presence of memory problems, confusion, and personality shifts is unsettling to those affected. Often friends and loved ones are the first to notice such changes. Getting the individual properly evaluated depends not only on their willingness to participate but also the availability of resources – including access to experts in dementia care. A history and physical exam should be first and include a recognized cognitive screening tool. If warranted, a more involved work-up might involve brain imaging and referral to a neuro specialist for confirmatory testing as well as management recommendations.

Sources

Alzheimer’s Association. Medical tests for diagnosing Alzheimer’s disease. https://www.alz.org/alzheimers-dementia/diagnosis/medical_tests

Alzheimer’s Association. Overcoming stigma. https://www.alz.org/help-support/i-have-alz/overcoming-stigma

de Miranda, L. F. J. R., Matoso, R. O., Rodrigues, M. V., de Lima, T. O. L., Nascimento, A. F., Carvalho, F. C., Moreira, D. R. M., Fernandes, J. C., de Paula, J. J., Magno, L. A. V., Caramelli, P., & de Moraes, E. N. (2011). Factors influencing possible delay in the diagnosis of Alzheimer’s disease: Findings from a tertiary Public University Hospital. Dementia & neuropsychologia, 5(4), 328–331. https://doi.org/10.1590/S1980-57642011DN05040011

Li Yang, Jing Yan, Xiaoqing Jin, Yu Jin, Wei Yu, Shanhu Xu, Haibin Wu, Ying Xu & Caixia Liu (2018). Estimation of diagnostic performance of dementia screening tests: Mini-Mental State Examination, Mini-Cog, Clock Drawing test and Ascertain Dementia 8 questionnaire, Aging & Mental Health, 22:8, 948-952, DOI: 10.1080/13607863.2017.1320701

National Institute on Aging. How is Alzheimer’s disease diagnosed? https://www.nia.nih.gov/health/how-alzheimers-disease-diagnosed#:~:text=Perform%20brain%20scans%2C%20such%20as,other%20possible%20causes%20for%20symptoms.

WRITTEN BY:

D. Dow Stick MSN, APRN

Dow Stick is a freelance health writer and nurse practitioner in Western North Carolina. She earned a Bachelor of Science degree in Biology from the University of Mary Washington and a Master of Science degree in Nursing from East Tennessee State University. Her experience as an advanced practice nurse includes adult primary care, hospice and palliative care, chronic disease management, and addiction medicine. Her interests are in the health and wellness of older adults as well as the advocacy and support of those living with dementia, especially her own 95-year-old grandmother.

Nurse Dow LLC is her content creation platform designed to provide print editors and marketing managers with authoritative copy that resonates with health consumers. Find her at NurseWriterDow.com.