Caring for Dementia

Why is intimacy important?

Our lives gain meaning through connections with others, be it with a partner, parents, children, or pets. Experiences shared with others evoke stronger emotional responses than moments we experience on our own. Social well-being holds an important spot in shaping our overall quality of life.

When individuals with dementia transition to long-term care homes, the positive connections in their lives significantly diminish, potentially compromising their well-being. The fundamental human need for intimacy, companionship, and affirmation persist, requiring an open-minded approach to continuing these connections in long-term care settings. We must recognize that the desire for social connection goes beyond old age and cognitive impairments.

Navigating the balance between the need for connection, healthy sexuality, and concerns about “sexual abuse” and “unwanted touching” presents a common challenge. The definition of healthy sexuality varies among individuals based on personal experiences, morals, and values. There’s no universally agreed-upon standard for what constitutes as healthy sexuality. There is a distinct difference between emotional (intimate) relationships and physical (sexual) relationships. Consider this: If you could engage in sexual intercourse but lacked other forms of intimacy—kissing, holding hands, physical touch, and cuddling—would that fulfill your sense of happiness? The innate human longing for connection and love extends beyond physical intercourse; it encompasses a broader range of intimate experiences. It’s important to emphasize that healthy sexuality is not confined to intercourse, it can also encompass intimate relationships also.

Dementia and Intimacy

Individuals with dementia may engage in acts such as kissing, holding hands, and cuddling, yet many long-term care facilities tend to label one party as an instigator and the other as a victim. This typically goes on to be categorized as a sexually expressive behaviour, often resulting in the implementation of behavioural care plans, introducing anti-psychotic or anti-depressant medications, and casting the instigator with a label as “a predator.” Blaming and scolding seniors for fulfilling a basic human need sets them up for failure in our care systems. Keeping this in mind, we also have an obligation to protect those who are unable to make decisions about the social connections in their lives.

In instances where individuals are unable to provide their consent for intimate relationships, they are more vulnerable to potential sexual abuse. This stems from an inability to navigate the dynamics of consent, placing these individuals at an increased risk in their personal relationships, co-resident relationships and caregiver relationships.

Capacity and consent: A grey area

Capacity and consent can be a “grey area” due to misconceptions such as, those who lack the capacity to manage financial or health decisions are automatically deemed unfit to engage in intimate relationships.

In Ontario, Canada, if a resident with dementia scores 14 or lower on the Mini Mental State Examination (MMSE), they are deemed unable to consent to physical touch (holding hands, emotional connectivity) with fellow co-residents. This, however, enters a grey area because the ability to consent to intimate relationships should not be solely determined by a numerical score. If these residents can articulate a refusal, comprehend the meaning of ‘no,’ and understand the nature of the intimate relationship they’re involved in, they should have the opportunity to connect with another individual.

The MMSE, assessing capacity, relies on questions like spatial awareness, spelling, and temporal orientation. While residents may struggle with recalling the current year or their location, they often retain an awareness of familiar faces, recognizing individuals as friends. This recognition should afford them the chance to establish connections. Vigilant monitoring of interactions among co-residents is important to ensure mutual connections, avoiding situations where one party overpowers another. Additionally, continual reassessment becomes essential, ensuring residents maintain the cognitive capacity to provide ongoing consent to intimate relationships.

In scenarios where an individual lacks the ability to independently consent to an intimate relationship, the involvement of Power of Attorney (POA) or Substitute Decision Maker (SDM) becomes vital. If the POA or SDM believes that the connection is genuinely enhancing the person’s quality of life, a delicate balance must be considered. The responsibility lies in ensuring that the individual’s best interests are upheld, and any decisions made align with their preferences, morals, values.. Collaborative discussions with care providers and other family members involved, guided by an understanding of the individual’s needs, should shape the approach, aiming to encourage connections that contribute positively to their overall quality of life.

I’m not suggesting that anybody engages in physical sexual activity, but if individuals with dementia demonstrate the cognitive capacity to consent to a physical sexual relationship, can comprehend potential consequences, can respect boundaries, and find joy in each other’s company, allowing them to engage in this connection is important. If they can recognize and acknowledge the above, they deserve a fundamental right to privacy to engage in sexual or intimate activity. Despite the discomfort it may evoke, it’s important to understand that older individuals, including those with dementia, possess a legitimate need for healthy sexuality and intimacy.

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