More Than Half of Older Adults With Dementia Sexually Active

Damian McNamara

September 26, 2018

More than half of partnered individuals who screen positive for dementia report they are sexually active, new research indicates.

A nationally representative study of more than 3000 older adults in the United States who reported having a partner showed that 59% of the men and 51% of the women with dementia said they were sexually active. Overall, whether they had a partner or not, 46% of the men and 18% of the women with dementia were sexually active.

Clinicians should inquire or initiate conversations about sexual activity in this population and address any related problems cited by patients, such as problems with sexual interest or function or the possibility of abuse, the researchers note. More than 1 in 10 respondents, for example, reported that they felt frightened or threatened by their partner.

"The results of our study can help neurologists treating patients for early dementia," principal investigator Stacy Tessler Lindau, MD, Section of Geriatrics and Palliative Medicine, Department of Obstetrics and Gynecology and Medicine, University of Chicago, Illinois, told Medscape Medical News. "Many have sexual function problems that are going unrecognized by a physician but that are treatable."

The findings were published online September 12 in the Journal of the American Geriatrics Society.

Growing Concern

As reported by Medscape Medical News, in a new report released last week, the US Centers for Disease Control and Prevention predicts that the prevalence of Alzheimer's disease (AD) or related dementia in Americans older than 64 years will increase 178% between 2014 and 2060. In addition, past research has predicted that the number of home-dwelling Americans with AD will grow to more than 8 million by 2050.

"Yet very little is known about the sexuality of home-dwelling people with dementia," Lindau said. Problems such as psychosocial decline, loss of recognition of their partner or of the most recent sexual event, difficulty with sequencing of behaviors, or diminished sexual interest may interfere with sexual function, the researchers note. Yet later-life sexual activity has been shown to be associated with better physical and mental health, higher quality of life, lower rates of loneliness, and, in some studies, better cognitive function, they write.

"Generalizable evidence is needed to overcome biases and inform medical professionals, legal advocated, policy-makers, and the public regarding sexual norms in older adults with cognitive impairment," they note.

The current investigators built on their previous research, which demonstrated that most home-dwelling individuals aged 57 to 85 years who had a partner were sexually active.

Lindau and colleagues expanded on these findings by assessing how cognitive problems might affect sexual activity among those aged 62 to 91 years (mean age, 72 years).

They examined responses from 1514 men and 1682 women participating in the National Social Life, Health, and Aging Project (NSHAP). The investigators classified participants by sex, age group, and cognitive status — normal, mild cognitive impairment (MCI), or dementia — on the basis of modified Montreal Cognitive Assessment scores.

The study population included 1752 people with normal cognition, 865 with MCI, and 579 with dementia. The researchers note that because they excluded individuals who did not have the capacity to provide informed consent or complete an interview, most of the patients in the group with dementia likely had early-stage dementia,

Sexually active study participants reported having had sex with at least one partner in the prior 12 months. NSHAP also asks about sexual problems present for "several months or more" over the same period.

Race, ethnicity, educational attainment, and partnership status are self-reported in the NSHAP. The subgroup of partnered participants included 1283 men and 1023 women. Two people interviewed were in same-sex relationships.

Overall, 73% of men and 80% of women, regardless of cognitive state, reported at least one problem related to sexual function. Among those in the dementia group, 37% of men and 12% of women indicated that they were bothered by sexual problems.

Table. Prevalence of Select Sexual Problems in Cognitively Normal Persons, Those With MCI, and Those With Dementia

Problem Cognitively Normal MCI Dementia P Value
Lack of interest (men, %) 33 33 40 .39
Lack of interest (women, %) 58 60 65 .81
Pain during intercourse (men, %) 2 2 3 .69
Pain during intercourse (women, %) 11 10 5 .37
Sex not pleasurable (men, %) 8 11 17 .002
Sex not pleasurable (women, %) 16 21 10 .94
Avoided* sex because of problems (men, %) 30 29 26 .41
Avoided* sex because of problems (women, %) 24 19 13 .09
*Only participants who reported one or more problems with sex were asked about avoidance.


Asked whether any study result surprised her, Lindau said she was "particularly interested in the finding that difficulty with sexual arousal was lower among men and women with dementia than the other groups."

Interestingly, a lower proportion of men with dementia (29%) reported arousal difficulties, defined as difficulty achieving or maintaining an erection, compared with cognitively normal men (46%). Similarly, a smaller percentage of women with dementia reported difficulty with lubrication compared with cognitively normal women (12% vs 27%, respectively).

"Ask About Sexual Activity"

Only a minority of respondents said they discussed changes in their sex life possibly related to a medical condition with a physician; these included 33% of men with normal cognition, 23% with MCI, and 17% with dementia. Among women, the proportions were 12%, 7%, and 1%, respectively.

Past studies have suggested that middle-aged and older adults regard sexuality as a relevant topic to discuss with their physicians and want their physician to initiate the conversation, Lindau said.

"If the physician doesn't initiate, people suffer unnecessarily with conditions that are treatable and that can negatively affect not only their own health and quality of life but the health and life of their partner," she said.

Experts and guidelines have previously called on physicians to screen for elder abuse, including sexual abuse. However, "definitions of abuse and standards of consent to sex vary widely and can be difficult to operationalize in practice," the authors note. "This study adds new evidence to inform improvement of these standards."

The fact that a patient is older should not preclude such discussions, Lindau said. In fact, in the current study, more than 40% of partnered men and women aged 80 to 91 years with dementia were sexually active.

"The evidence shows that older people, with and without dementia, are sexually active at much higher rates than probably most physicians believe. Many people suffer in silence with problems that have solutions," she said.

Frightened or Threatened

"I was saddened by the finding that more than 1 in 10, across the board, of middle-aged and older people feel frightened of or threatened by their partner," Lindau said. This finding applied to 11% of men and 12% of women in the study.

"Health starts at home, and people cannot be healthy if they are living in fear in their own home," she added.

The proportion of women with dementia who reported having sex primarily out of obligation or duty (12%) was similar to the other cognitive groups. In contrast, men with dementia were more than 10 times more likely to report this behavior compared with men with normal cognition (adjusted odds ratio, 10.67; 95% confidence interval, 4.01 - 28.37). The investigators found that 17% of men with dementia, 5% with MCI, and 2% with normal cognition reported having sex primarily out of obligation or duty.

About 80% of men and 53% of women, regardless of cognitive status, said they felt sex was at least somewhat important in their lives. In addition, 60% of men and 65% of women felt satisfied with the quality of their sex life overall, although a majority felt sex was not frequent enough.

"I thought it was interesting that most people, regardless of cognitive function status, say they are having less sex than they would like," Lindau said.

They investigators have created a Web-based knowledge dissemination platform called WomanLab to ensure that everyone has access to the latest evidence about female sexual function in the context of aging and disease. The platform was created with foundation and private support.

They also publish a blog with questions and answers about sex and dementia. It includes practical resources for physicians and the public.

The next step in their research will center on understanding how best to close the big conversation gap between physicians and patients and between partners that causes unnecessary suffering and results in lost years of sexually active life, Lindau said.

Asked to comment on the study by Medscape Medical News, Kristin Williams, MD, a neurologist and dementia specialist at VCU Health in Richmond, Virginia, who was not involved with the research, said, "It raises some very interesting ethical points, particularly involving capacity to consent to sexual activity."

Dr Lindau and Dr Williams have reported no relevant financial relationships.

J Am Geriatr Soc. Published online September 12, 2018. Full text

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