Romantic Relations When a Spouse Has Dementia: An Overview
An estimated 5 million women and men in the United States are diagnosed with Alzheimer’s at this juncture. More Americans still are diagnosed with other types of dementia, although Alzheimer’s disease is far and away the most common type of dementia afflicting people across the country today. By 2050, it is anticipated that the number of people with Alzheimer’s will have risen to between 13 and 14 million.
A person diagnosed with Alzheimer’s disease or some other type of dementia will require the assistance of a caregiver. In the United States, the person who often serves as a caregiver for a person with Alzheimer’s disease is a spouse. Beyond the spouse, the caregivers of people with Alzheimer’s disease tend to be adult children of the parent with the condition.
An array of ancillary issues are associated with Alzheimer’s and other types of profound dementia. One of the most sensitive issues involves a spouse providing caregiver assistance to a person with Alzheimer’s disease who also is developing a romantic relationship with someone else. The spouse tending to the day-to-day needs of a person in the advanced stages of Alzheimer’s is dating.
There are also situations in which a person diagnosed with Alzheimer’s will form a romantic relationship with another individual who is not his or her spouse. This can occur during the earlier stages of Alzheimer’s disease.
What Is Alzheimer’s Disease?
The National Institute on Aging defines Alzheimer’s disease as:
A brain disorder that slowly destroys memory and thinking skills and, eventually, the ability to carry out the simplest tasks. In most people with the disease — those with the late-onset type symptoms first appear in their mid-60s. Early-onset Alzheimer’s occurs between a person’s 30s and mid-60s and is very rare. Alzheimer’s disease is the most common cause of dementia among older adults.
Stages of Alzheimer’s Disease
Before discussing the thorny subject of romantic relations when a spouse has dementia, we first visit with you about the stages of Alzheimer’s disease. This is necessary to lend perspective regarding when a spouse-caregiver might develop a romantic relationship with someone else. It also provides perspective as to when a person diagnosed with Alzheimer’s disease might form such a relationship.
Generally speaking, healthcare professionals that work with Alzheimer’s patients tend to classify the disease into five stages:
- Preclinical Alzheimer’s disease
- Mild cognitive impairment due to Alzheimer’s disease
- Mild dementia due to Alzheimer’s disease
- Moderate dementia due to Alzheimer’s disease
- Severe dementia due to Alzheimer’s disease
It is during the mild and moderate stages of Alzheimer’s that a person with this type of dementia may develop feelings and even romantic involvement with someone that is not that individual’s spouse. This type of relationship tends to develop within the confines of an assisted living facility where the person with mild to moderate dementia is living.
On the other hand, it typically is during the moderate to severe stages of dementia that a spouse-caregiver may develop an intimate relationship with someone who is not his or her spouse (the person diagnosed with Alzheimer’s disease).
Rethinking Family Relationships
The stark reality is that a situation in which one of the spouses in a married couple has latter-stage dementia necessitates rethinking what is considered “normal” for marital and family relationships. According to Juliet Holt Klinger, a gerontologist and dementia expert, “I strongly believe that we could use more tolerance for what we consider ‘normal’ for family relationships. But the moral and ethical questions for those dealing with a marriage that involves dementia persist.”
There can be no doubt that romantic relationships when a spouse has dementia present a challenging situation to navigate on many levels. Some of the issues at play include:
- Cognitive abilities of a person with Alzheimer’s disease and the ability of that individual to be a consenting participant in a romantic relationship with another person (including another individual who is not that individual’s spouse)
- Role of assisted living staff when confronted with a situation in which a resident with mild to moderate dementia (but legally capable of the consent) becomes involved (or desires to be involved) in a romantic relationship with someone who is not that person’s spouse
- Religious issues associated with adultery
- Impact on the family of an extramarital relationship involving either a consenting spouse with a diagnosis of Alzheimer’s or a caregiver-spouse primarily responsible for providing care to a spouse with Alzheimer’s disease.
Story of U.S. Supreme Court Justice Sandra Day O’Connor and her Husband
The immediate reaction to even the thought of one spouse or another developing a romantic relationship with another person when the other partner in a marriage is diagnosed with Alzheimer’s disease can be shocking and alarming. People on the proverbial outside looking in are apt to be highly judgmental and view this type of development negatively. This type of adverse response to a romantic relationship with a third party when a spouse has dementia may persist until people learn of the story of U.S. Supreme Court Justice Sandra Day O’Connor and her husband, John.
The New York Times spotlighted the story of Justice O’Connor and her husband in what has become something of an iconic piece entitled “Love in the Time of Dementia.” John O’Connor developed dementia and transitioned to living in an assisted living community. While in the community, John became romantically involved with another community resident.
Rather than feeling spurned or angry, Justice O’Connor accepted the “new normal” in her life. She stated without equivocation that she was pleased to see her husband find joy and contentment in his life while afflicted with Alzheimer’s disease – even if that meant a major adjustment in her relationship with her husband. Indeed, Justice O’Connor made it clear that she truly enjoyed spending time with her husband and his romantic interest when she came to the assisted living community the pair called home.
As a postscript, Justice O’Connor herself would develop dementia in the twilight years after her husband passed away. Justice O’Connor announced her diagnosis very directly and simply:
Some time ago, doctors diagnosed me with the beginning stages of dementia, probably Alzheimer’s disease. As this condition has progressed, I can no longer participate in public life.
Justice O’Connor and her husband make it clear that there is life after a diagnosis of Alzheimer’s disease, including the prospect of romance.