The onset of dementia, such as in Alzheimer’s disease and other forms of progressive neurodegenerative disorders, has a profound impact on spousal relationships. While one spouse gradually becomes a care-receiver and the other a care-giver, the very nature of their bonding ties begins to change.
Couples enjoy a variety of activities together, such as meals, movies, vacations, walks, or visits with friends and family. Couples engage in supportive conversations, sharing their views, daily experiences, and a good laugh at the end of the day. Developing their own unique way of communicating with one another, and creating a history and identity together—raising families, developing social relationships, attending social engagements, making a home—couples become a strong social unit.
Dementia, however, can affect every one of those relationship-building blocks that couples so lovingly cultivate together, often over a lifetime.
Changes in perception, memory, and attention tend to render many previously enjoyed activities unsuitable for dementia patients. Caregiving spouses find that they must adapt their own activities in order to accommodate their partners’ changes in ability to participate. Dementia affects communication skills and patients are no longer able to share those private conversation moments in the same way, creating a melancholic void for their partners at the end of every day. Apathy is another common symptom of dementia, causing decreased interest in participation in social activities, further distancing themselves from friends and family.
Eventually, precious memories of a long, cherished marital history start fading away, leaving the caregiving spouse alone within their memories coping with the fact that their spouse is no longer fully cognitively available.
The decline in options for shared activities, the losses in spouse’s emotional support, and the erosion of communication channels between the couple—taken together, these factors will ultimately impact intimacy. The very nature of the relationship becomes affected as dementia-related symptoms begin to alter the patient’s mood, behavior, and ability to conduct personal interactions. Their spouses are also deeply affected by these changes, often reporting feelings of increased loneliness and a longing for having the now vanishing relationship back to what it was before.
Expressions of affection are essential to our well-being, and the need for closeness does not diminish with age, or with cognitive decline. Dementia patients seek and thrive in closeness, although in different ways than they did prior to the on-set of dementia. Spouse caregivers, yet again, need to adapt to their loved one’s changes to allow for loving expressions.
In terms of sexuality, dementia can affect a person’s desire and ability for expressing intimacy in a variety of ways. Patients may experience fluctuation in libido levels, some experiencing notable increase in sexual desire, others becoming uninterested in sexual activities. Some symptoms of dementia can result in erectile dysfunction, creating further challenges to intimacy. Changes in the cerebral frontal-cortex may cause sexual disinhibition, resulting in impulsive, uncharacteristic, or inappropriate sexual conduct. Some patients begin to engage in sexual activities mechanically, devoid of any emotional attachment. Changes in communication skills may cause further disconnect between loving affection and sexual expression, which in turn can cause the caregiver partner to lose interest in sexual activities.
Difficulties in intimacy for couples affected by dementia are common and can be expected, although it is not possible to predict what specific dementia-related changes any particular patient will experience. Each patient experiences dementia symptoms in unique ways, and each couple will have their unique challenges. Moreover, depending on the progression of the patient’s underlying disease, changes can be fluctuating or temporary, which brings an additional element of unpredictability and insecurity to the relationship.
However challenging the dementia-related changes can be, it is important for the health and wellbeing of both spouses to nurture the relationship, maintain a sense of intimacy, and allow for expressions of love and affection. When communication skills decline, the use of touch becomes an even more powerful instrument for couples to convey affection. People with dementia need to feel loved, to feel safe, and to feel accepted. The loving touch and affection from their spouses can bring them a lot of comfort and even help lessen some of the negative behavioral and psychological symptoms of dementia.
Every couple facing dementia must find new ways to nurture and promote their intimacy, and many times the caregiver spouse is the one who bears the greatest share of the responsibility for keeping the relationship alive. This is a recurrent topic in conversations among spouse caregivers attending support groups, where they often exchange valuable information and coping strategies on how to preserve their relationships throughout the progression of dementia.
In essence, all methods of enhancing communication between spouses can potentially help in promoting intimacy and preserving the relationship. There are a variety of programs and workshops available for couples affected with dementia, designed with the purpose of increasing communications and togetherness. Programs that stimulate communication between spouses through shared artistic expression, including visual arts, musical, and body work, are particularly beneficial.
Some of the dementia-related symptoms affecting the relationship can be addressed and alleviated with appropriate medical care. Spouse caregivers should be encouraged to discuss relationship challenges with the doctor and seek possible treatment options.
Although couples will never be able to restore a relationship back to what it was before, there is much that can be done to help nurture the relationship and keep both partners emotionally fulfilled and supported as dementia progresses.
Relationships are complex and multifaceted, and very vulnerable to the changes each partner experiences individually. Spouse caregivers should keep in mind that although dementia takes much from their loved ones, there is still much left in them. Although their ways of expressing love change, love remains intact. And each moment may bring a new and precious way to honor and express it. Understanding the progression of dementia and making room for loving moments to flourish may well be the key to a successful marriage and a successful partnership in times of dementia.