Dementia and Sexual Expression in Long-Term Care Facilities

Geriatricians, and other health care providers often lack the training and assessment tools to incorporate discussions about sexual expression into every aging patient’s plan of care - especially those with dementia.

Key takeaways:
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    Developing a patient-centered policy supporting sexual expression for loved ones with dementia is challenging because of the current framework and laws around which decisions are made.
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    Geriatricians and other health care providers need training and assessment tools to address and support the sexual expression of those with dementia.
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    Education and policies must go beyond "mainstream" heterosexual behaviors and include the sexual expression of loved ones in the LGBTQ community.

Developing a patient-centered approach to support sexual expression in your loved one with dementia in a long-term care facility is challenging. Issues with outdated belief systems, negative family and staff attitudes toward sexual activity, and a lack of privacy are some of the obstacles we face surrounding sexual expression in the older population.

Sexual expression in long-term care facilities

The nursing home industry is highly regulated. Fear of violating regulations and Medicare conditions often gets in the way of patient-centered care.

A lack of research and basic clinical information on sexual expression in residents with dementia is another deterrent to effective policy development. The result is ethical, legal, and clinical issues supporting sexual expression in a person with dementia.

State criminal statutes provide the current framework for reviewing whether sexual activity is lawful. Using this framework and the current memory and cognitive testing, there is little room for the rights of the person with dementia to engage in any level of sexual expression.

Challenges with training and stigmatization

Maggie Syme, Ph.D., MPH, LP, a Clinical Psychologist and Director of the Family Caregiver Wellness Program for the Deanna and Sidney Wolk Center for Memory Health at Hebrew SeniorLife in Boston, Massachusetts, asserts that: “Geriatricians are not equipped from their training and then they are facing all the stigmatizing, psychological issues that they have to break through to think about sexual expression in a very genuine way.”

Dr. Syme describes the balancing act a facility must perform to support the right to sexual expression in a resident with dementia. The activities must be meaningful, wanted, and fulfill a need, and most importantly, they must be safe and supported.

It is clear that if a level of intimacy is to be preserved for your loved one, it must be a discussion that you and your loved one raise with the geriatrician or other health care provider creating your loved one’s plan of care.

Does dementia diagnosis prevent the capacity for intimacy?

Having dementia does not automatically mean your loved one cannot be intimate. However, the capacity may be transient. There may be certain times of the day when processing information, making decisions, and communicating are better than others.

Families can request that intimacy be addressed by their loved one’s care plan. You can provide information on who your loved one is intimate with, the activities engaged in, and the times of day they are open to these sorts of activities. Be sure to include any privacy or other physical needs that they may need to make the activity safe.

Choosing the right facility for your loved one

When deciding on a facility for your loved one, being prepared with a set of questions regarding sexual expression can be extremely useful. You’ll be able to glean all the information necessary to make an informed decision.

Have the geriatrician, psychologist, and facility staff received sexual expression training specific to dementia?

Is there a written policy that can balance your loved one’s needs with the safety and privacy of your loved one, the partner or spouse, and the community?

Will you and your loved one be allowed to review and discuss the sexual expression policy with the facility staff?

Will the following information be gathered from you and your loved one?

  • History of sexual expression.
  • Loved one’s ability to express consent verbally or non-verbally.
  • Physical concerns your loved one would need assistance with.
  • Cultural or religious considerations.
  • Level of intimacy your loved one understands.
  • Your loved one’s capacity to consent – the ability to show a basic understanding of the activities involved and the potential risks.
  • The ability of your loved one to indicate what activities are not desired.

What privacy accommodations will be provided?

Are there procedures for monitoring activities and safety in the care plan?

What policies and education have been implemented to include loved ones who may be members of the LGBTQ community?

Safe spaces for intimacy for patients with dementia

If the sexual expression is important to your loved one, ascertain if there is a space where your loved one can safely be intimate in the facility.

Physical environment considerations must be incorporated into your loved one’s care plan. Medicaid only pays for a semi-private room. In a situation where the roommate can see or hear the intimate behavior, a separate private space is needed.

Equipment adjustments may also be needed, such as a wider bed, and precautions to prevent your loved one from falling. Their care plan should also be reviewed to ensure that there is the proper assistance with grooming and physical care to enhance their comfort with intimacy.

Supporting your loved one’s right to sexual expression in a long-term care facility will be challenging. Long-term care facilities try to protect residents from potential abuse by not developing sexual expression policies. This is due to ageism, lack of training, and legal repercussions, including lawsuits, criminal charges, loss of licensure, and regulatory fines.

When exploring whether a long-term care facility is a “good fit” for your loved one, there should be a discussion about how the facility trains its staff regarding sexual expression. Investigate how they incorporate the need for intimacy into the plan of care and physical setup. Helping your loved one obtain a Health Care Power of Attorney will also help ensure that your loved one will continue to safely enjoy the benefits of sexual expression.

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