How Relationships May Change with an Alzheimer’s Diagnosis

Alzheimer’s disease is a progressive, irreversible brain condition characterized by damage to the brain nerve cells. It is the most prevalent form of dementia, accounting for 60-80% of all dementia cases. People with Alzheimer’s disease typically experience memory loss, as well as gradual decline in thinking ability and brain function as brain cells deteriorate. At present, there is no known cure for the condition.

According to mental health experts, approximately 5 million Americans aged 65 years or older may be affected by Alzheimer’s disease. The slow decrease in brain activity eventually inhibits the ability to perform even simple, everyday tasks. Most people with Alzheimer’s disease first experience symptoms after the age of 60. While it is expected that older individuals may have some age-related issues later in life, Alzheimer’s disease is not a normal part of the aging process.

Current research suggests genetic, environmental, and lifestyle factors may contribute to the onset and progression of Alzheimer’s disease. Older individuals who have a family history of Alzheimer’s are at greatest risk for developing the condition.

How Roles May Shift for the Person Diagnosed

It is not unusual for a person who receives an Alzheimer’s diagnosis to feel angry, frustrated, depressed, or fearful of burdening loved ones with caregiving responsibilities. It may also be difficult to share the diagnosis with others due to fear of being viewed and treated differently.

Common symptoms of Alzheimer’s disease include:

• Sleeplessness
• Anxiety
• Depression
• Severe memory loss
• Difficulty remembering newly learned information
• Mood and behavior changes
• Disorientation and confusion about time, places, and events
• Baseless suspicions of caregivers, friends, or family members
• Difficulty walking, speaking, writing, and swallowing
• Decreased decision-making and problem-solving skills

While the initial symptoms may be mild, they tend to become more severe as the disease progresses through the brain. As a result, people with Alzheimer’s disease may find they are increasingly dependent on others for things they used to take care of themselves.

Role changes and adjustments in circumstance are not always easy to accept. For example, individuals with Alzheimer’s disease may find family members make important plans without asking for their input. Many affected individuals report feelings of frustration, loss, helplessness, and worthlessness when they are no longer the breadwinner, confidant, protector, lover, or primary caregiver they used to be.

Social isolation and depression are real concerns for individuals with Alzheimer’s disease. As the ability to communicate with other people decreases, it is more likely for individuals with Alzheimer’s to withdraw from the activities, events, and people they love.

How an Alzheimer’s Diagnosis May Impact Family and Friends

Family members may experience significant financial, emotional, and physical costs when caring for a loved one with Alzheimer’s disease. Day-to-day responsibilities such as cooking, feeding, cleaning, supervising, and communicating with the affected person may be highly stressful and physically challenging. Caregivers may also have to deal with the emotional burden of assuming family roles they feel unprepared for. They may also be thrust into situations which require them to make difficult decisions profoundly impacting a loved one with the condition or the rest of the family.

Friends may find it difficult to speak about an Alzheimer’s diagnosis out of fear of offending the affected person. It may also be awkward to discuss how the diagnosis could impact future interactions or plans that were previously made together.

Due to these potential challenges, it is highly recommended that friends and family members educate themselves about the disease. Many programs provide information on the different stages of Alzheimer’s and offer practical suggestions for caregivers. Other important strategies include self-care practices such as developing personal coping skills, remaining physically active, engaging in meditation, and building a strong network of loved ones who may provide support when caregivers feel overwhelmed.

Caregivers may also benefit from calling a 24-hour caregiver helpline or participating in a support group. Jill Denton, MFT, CSAT, CCS, states, “The best advice I can offer to a person whose partner suffers from Alzheimer’s is to connect with other folks who are sharing that experience. Most places have support groups for loved ones, and these groups can be invaluable.” These resources allow caregivers to freely express their concerns and receive the emotional comfort, reassurance, tips, shared experiences, and encouragement they need.

Andrea Risi, LPC, adds, “If the disease has progressed to a point where you are unable to receive understanding and validation, it would be in your best interest to seek professional support in finding realistic and sensible solutions.”

How Intimacy May Change with an Alzheimer’s Diagnosis

People with Alzheimer’s disease may experience physical and emotional changes that impact their sexuality, and it is common for their sexual behavior to either increase or decrease as time passes. These changes can have an impact on romantic relationships, so it is important for partners to consider their sexual needs and expectations for intimacy as the illness progresses.

Lilian Rozin, MFA, LCSW, RYT, explains, “A couple’s intimacy will most certainly be affected when one partner has a diagnosis of Alzheimer’s. The person who has Alzheimer’s may suffer from depression, grief, anger, and fear in addition to memory loss and the physiological effects of the disease. They are likely to struggle with loss of autonomy and may resent their partner for ‘taking’ their independence or telling them what to do. They often undergo personality changes but don’t realize they have, so are surprised at their partner’s ‘strange’ reactions to them.” A partner may experience similar emotions, especially if they resent being placed in a semi-parental role or are uncertain how comfortable the affected party is with sexual contact.

Depression affects many individuals with Alzheimer’s disease. This may lead to low motivation, loss of interest in previously pleasurable activities, and reduced intimacy. While there are some medications that may be prescribed to treat depression, these drugs may have side effects that adversely impact sexual drive and performance.

It is crucial for partners to be open and honest with each other. Learning about the effect Alzheimer’s disease may have on sexual activity helps each partner understand what they should expect. By accepting that expressions of intimacy will change over time, intimate partners position themselves to explore new, appropriate ways of showing love and connection. This may include sharing memories of past intimate moments or non-sexual touching. It may be a good idea to speak with a health care professional if sexual changes become an issue for one or both partners.

Relationship Tips for Those Diagnosed with Alzheimer’s

Despite the many challenges associated with Alzheimer’s disease, there are several steps people can take to ensure their relationships remain positive and productive. Perhaps the most important is the need for people affected by this condition to continue viewing themselves as unique individuals with many things left to experience in life.

People with Alzheimer’s are encouraged to open up emotionally and share their experience living with the illness. Doing so can help put friends and family members at ease, reduce interpersonal tension, and contribute to more effective communication. It is also likely to be helpful when people who have Alzheimer’s specify how they would like to be treated, what social activities they feel comfortable participating in, and how they would like to continue specific relationships.

It may also be necessary for people who have Alzheimer’s to learn how to ask for assistance, as loved ones may be uncertain when to offer help. Speaking about one’s needs and expectations for support can contribute significantly to the process of finding new, effective ways of working together.

After an Alzheimer’s diagnosis, many personal relationships may need to be reevaluated. It is recommended not to dwell on people who may be unable to provide support or take their absence personally. It may be best to give these individuals the opportunity to come to terms with the diagnosis and focus instead on strengthening the supportive relationships currently available. Showing appropriate love, trust, and gratitude to the people who remain present and available is only likely to strengthen existing emotional bonds.

References:

1. Alzheimer’s Association. (n.d.). alz.org. Retrieved from http://www.alz.org
2. Alzheimer’s disease fact sheet. (n.d.). National Institute on Aging. Retrieved from https://www.nia.nih.gov/alzheimers/publication/alzheimers-disease-fact-sheet
3. Sex and intimate relationships. (n.d.). Alzheimer’s Society. Retrieved from https://www.alzheimers.org.uk/info/20029/daily_living/12/sex_and_intimate_relationships

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