Dementia and its impacts on the intimate,sexual couple relationship: A systematic review of qualitative research studies

Abstract

Objective

There is growing evidence for the need to recognize persons with dementia as sexual beings who wish to continue expressing their sexuality, including within their couple relationship. The aim of this literature review was to investigate empirical qualitative studies that examined sexuality and sexual intimacy in the couple relationship when one spouse has dementia.

Method

A systematic literature review was performed in January 2021, five data bases were searched: Pubmed, MedLine, Lilacs, Scopus, and SciELO. The references of articles included in the review were screened together with the references of other relevant reviews.

Results

Nine studies were identified that investigated sexuality and sexual intimacy from the perspective of the couple living with dementia or from the perspective of the spouse. The analysis identified four key themes: addressing dementia and sexuality; challenges to maintaining sexuality within the couple relationship; forms of sexual expression; and the desire to be seen as a sexual being.

Conclusion

Despite evidence of the importance of sexuality in later life and the positive effects it has on the quality of the couple relationship, research has identified the difficulty of destigmatizing sexuality and older persons, particularly when considering couples affected by dementia. Further research is required to better understand how living with the illness impacts sexual expression and the intimacy of the couple relationship.

Keywords

Alzheimer’s disease sexuality intimacy couples relationships dementia

Introduction

Significant changes in demographics with a growing aging population worldwide and the associated increase in the number of people living with dementia together with greater tolerance towards sexuality in general have contributed to the need for more knowledge in the field of sexuality and dementia. Dementia is an umbrella term for cognitive illnesses that affect memory, learning, and behavior, the most common form of which is Alzheimer’s disease which accounts for approximately 70% of cases. In 2017, the number of people living with dementia worldwide was estimated to be over 50 million, and this number is anticipated to increase to 152 million by 2050 (World Alzheimer Report 2015; World Health Organization, 2017a). A significant proportion of people with dementia live in their own homes, and a large percentage of these are cared for by their spouses, which means the couple relationship is often sustained throughout the progression of the disease. A dementia diagnosis impacts various aspects of a marital relationship: friendship, communication, reciprocity, love, and intimacy. The concerns over role change, when a spouse’s prior role as husband or wife, changes to that of care provider, dependency and care burden constantly challenge the stability and meaning of the marriage over the course of the illness (Harris, 2009; Merrick Camic & O’Shaughnessy, 2016). The progressive nature of the disease means that it constantly presents challenges to the couple, and maintaining an intimate sexual relationship, and a sense of self and couplehood within the relationship is often one of the greatest challenges (Bielsten et al., 2018; Harris, 2009; Merrick, Camic & O’Shaughnessy, 2016; Youell, Callaghan & Buchanan, 2016).

Sexuality is a multifaceted construct and is reflected in the behaviors, attitudes, fantasies, beliefs, and values of individuals (Hillman, 2012). The World Health Organization (2012, 2017b) draws attention to the importance of how sexuality is expressed through the interaction of various factors, including biological, psychological, social, cultural, and religious influences. This understanding is especially important when studying the sexuality of older adults and particularly older adults with dementia given that such a diagnosis and the progression of the illness can have a profound effect on the couple dyad (Simonelli et al., 2007; Youell, Callaghan & Buchanan, 2016).

Research into the importance of sexuality, sexual expression, and remaining sexually active on the quality of life has increased during the previous two decades, and an important body of knowledge has developed confirming its important role in later life (Bauer Haesler & Fetherstonhaugh, 2016; DeLamater and Koepsel, 2015; Sinković & Towler, 2019; Srinivasan et al., 2019; Traeen et al., 2019). However, the research also highlights that the importance of sexuality for older people living with dementia is often overlooked or underestimated, and there is a tendency to accept ageist stereotypes of older people as sexless and undesirable (Sales & Menezes, 2017; Sandberg, 2015; Syme & Cohn, 2016). For several decades, the biomedical approach to sexuality and dementia often focused on questions of hypersexuality and sexual dysfunction and stressed the consequent loss of sexual satisfaction (Bauer, Nay et al., 2014; Dourado et al., 2010). The intimate sexual activities of people with dementia have often been referred to in the literature as “inappropriate,” “improper,” and “hypersexual” (Benbow & Beeston, 2012). Studies highlight the difficulty of destigmatizing sexuality when considering couples affected by dementia, and the difficulty to understand and place sexual intimacy as a changing need throughout an individual’s lifespan, irrespective of a dementia diagnosis (Bartlett & O’Connor, 2010; D’cruz, Andrade, & Rao, 2020; Sandberg, 2020). As a result, this construction of sexual intimacy as pathological ignores the complexity of the feelings of couples living with the disease.

Despite the growing recognition of the existence and importance of sexuality in later life, persons with dementia are rarely acknowledged as sexual beings with sexual needs. Research has identified the normalization and internalization of ageist stereotypes, by professional health workers, care partners, and society in general, of older adults and persons with dementia as being asexual and understood in terms of enfeeblement and dependency (Leibing & Cohen, 2006; Srinivasan et al., 2019; Youell, Callaghan & Buchanan, 2016).

Research into sexuality and dementia has often focused on the later stages of the illness, when the person with the illness is more cognitively compromised. However, studies demonstrate that people in the early and middle stages continue to regard themselves as sexual beings (Harris, 2009; Sandberg, 2020; Youell, 2015; Wright, 1998). A dementia diagnosis does not erase sexuality, but rather alters the expression of love and affection.

The recent shift in paradigm from a dysfunctional and pathological perspective to an interpersonal approach for researching the impacts of a dementia diagnosis on the sexuality of the couple relationship has also resulted in more qualitative research being undertaken. These more recent studies have identified that a long-term healthy relationship is a key factor in maintaining, or even increasing, intimacy and feelings of love and togetherness when the couple is living with dementia (Harris et al., 2011; Hayes, Boylstein & Zimmerman, 2009; Sandberg, 2020; Shavit et al., 2019; Swall, Williams & Hammar, 2019; Wright, 1998; Youell, Callaghan & Buchanan, 2016).

This growing interest in the area of couples living with dementia resulted in couplehood and a couple-centered perspective emerging as an important concept for research investigating the experience of dementia within marriage (Hellström, Nolan, & Lundh, 2007; Hellström & Torres, 2013) and has produced important studies that examine the impact of a dementia diagnosis on the quality of the relationship (Braun et al., 2009; Harris, 2009; Hellström, Nolan & Lundh, 2007). Couplehood acknowledges the impact that dementia has on both marital partners and on the marital relationship, and suggests that couples affected by dementia should be viewed as a unit in order to reach a more comprehensive understanding of the meaning of the illness for each partner and the relationship (Bielsten et al., 2018; Daniels, Lamson, & Hodgson, 2007; Swall, Williams & Hammar, 2019). However, despite this shift, little research has enquired into the experience or impact of dementia on the sexual intimacy of the couple relationship.

The aim of this literature review was to examine qualitative studies that researched sexuality and sexual intimacy when one spouse has dementia and the couple continue living together.

Search strategy

The following data bases were searched: Pubmed, MedLine, Lilacs, Scopus, and SciELO. Key words used were as follows: (Dementia) OR (Alzheimer’s disease), OR (Alzheimer’s); AND (sexuality), OR (sex), OR (intimacy) OR (sexual behavior); AND (couples), OR (marriage), OR (married), OR (relationships). Combined searches were carried out using Boolean operatives. A snowball search was subsequently conducted via Researchgate and Google Scholar using the functions “cited by” and “related articles” to capture any further studies not initially identified. In addition, the reference lists of the articles included in the review were checked for additional studies. These articles were critically analyzed and included in the review when relevant, which resulted in nine studies being included, as the search process (Figure 1) shows. Textbooks were also searched by hand to provide background information and further discussion for this review. The reference lists of articles included in the review were screened along with the reference list of other relevant literature reviews (Caldas, 2015; Evans & Lee, 2014; Holdsworth & McCabe, 2018; Wadham et al., 2016).

Figure 1.

PRISMA Flow diagram of search process.

The titles and abstracts were screened using the following inclusion criteria: used a qualitative methodological approach; involved persons living with dementia residing in the community (not institutionalized); involved people with dementia and/or their partners as active research participants; referred to the sexual or intimate relationship of the couple; studies were published in peer-reviewed journals; articles published in English or Portuguese; and research articles published from 2000–2020.

Review process and results

All titles and abstracts were reviewed independently by two reviewers and this assessment resulted in 42 articles being included for full screening. Each full-text article was read by the first author and re-read by another author and any disagreements were resolved through consulting the third author. This process resulted in eight qualitative studies being included. In addition, one mixed method study was also identified through the screening process and was considered to be of sufficient relevance for inclusion, bringing the total number of articles included in the review to nine (Table 1).

Table 1.

Characteristics of included articles.

Authors	Country	Aim	Participants	Methodological approach	Data collection method	Data analysis technique	Findings/results/conclusion
Dourado et al. (2010)	Brazil	To investigate the presence of sexual activity and satisfaction between persons diagnosed with Alzheimer’s and their spouses	36 dyads: 15 persons with mild diagnosis and their spouses. 21 persons with moderate diagnosis and their spouses	Cross-sectional design – transversal, non-randomized	MMSE	Statistical analyses	Alzheimer’s had an impact in the couples’ sexual activity and satisfaction, primarily by decreasing sexual intimacy and inverting partner roles
					CDR	Thematic analysis
					ASPID
					ZBI
					CSDD
					QSES
					Semi-structured qualitative interviews
Sandberg (2020)	Sweden	To explore experiences of sexuality and intimacy among heterosexual couples where one partner was diagnosed with Alzheimer’s disease	7 dyads	Qualitative study	Semi-structured interviews the person with Alzheimer’s disease and their spouse were interviewed separately	Thematic and narrative analysis	Sexuality and intimacy when living with dementia are linked to a broader psychosocial context, some couples living with dementia perceive sexuality and intimacy as challenging, the intimate sexual relationship also provides well-being and comfort to couples.
Sandberg (2020)	Sweden		7 dyads	Qualitative study		Thematic and narrative analysis	Experiences of sexuality and intimacy in couples living with Alzheimer’s disease should be considered in relation to life course positions and varying sexual scripts and “health scripts,” including expectations regarding health and cognitive function in different parts of later life
Harris (2009)	USA	To identify the perspectives of couples, when one partner has early-stage dementia, with respect to their intimate relationships and how they cope with the changes	32: 16 persons with dementia and 16 spouses	Qualitative phenomenological methodology, grounded theory	8 focus groups	Thematic analysis	Intimacy and sexuality are an integral part of a couple’s life and can be a major contributor to their quality of life. A typology emerged of 2 ways in which couples dealt with this impact of dementia. For both groups, the diagnosis had a detrimental effect on their level of sexual intimacy. However, one group was able to develop and draw on other levels of the relationship, becoming closer in the realms of psychological and emotional intimacy.
Harris (2009)	USA		32: 16 persons with dementia and 16 spouses	Qualitative phenomenological methodology, grounded theory	8 focus groups	Thematic analysis	The other group was unable to renegotiate these new patterns. Their communication with each other was limited
Sales and Menezes (2017)	Brazil	To understand the meaning of sexuality for the spouse caregiver of the elderly person with Alzheimer’s disease	8 spouses of partners with Alzheimer’s	Qualitative study	Semi-structured interviews	Thematic content analysis	A lack of knowledge about the term “sexuality,” as well as the shame of talking about the subject. Sexuality was present in the lives of some and abolished in the lives of others
Youell et al. (2016)	UK	To explore experiences of relational intimacy (including sexual intimacy) in long-term relationships when one partner has dementia	6 spouses of partners with dementia	Qualitative phenomenological research	Semi-structured interviews	Interpretive phenomenological analysis	Three themes emerged “everydayness,” “absent presence,” and “I don’t know if you want to know this…,” which highlighted both continuity and disruption of intimacy in their experience of these relationships.
Youell et al. (2016)	UK		6 spouses of partners with dementia	Qualitative phenomenological research	Semi-structured interviews	Interpretive phenomenological analysis	Sex and sexual intimacy are ambivalent and ambiguous areas for participants
Shavit et al. (2019)	Israel	To describe and analyse the meaning of love in relationships between couples living with Alzheimer’s disease (AD)	N = 16 spouses of partners with Alzheimer’s	Qualitative narrative approach	Open discussion and semi-structured interview	Thematic analysis	Five major types of relationship developments occurred after the disease emerged: Love died, love became weaker, love did not change, love was enhanced, and the spouse fell in love again
Harris, et al. (2011)	USA	To understand the lived experiences of individuals with a spouse suffering from Alzheimer’s and how this diagnosis affects intimacy within these marital relationships	10 spouses of partners with Alzheimer’s	Phenomenological approach	Structured interviews with open-ended questions	Thematic analysis	Five key themes were identified. All participants reported some strain in the relationship, Alzheimer’s affected closeness and connection within the couple. The quality of the marital relationship prior to diagnosis impacted all participants.
Harris, et al. (2011)	USA		10 spouses of partners with Alzheimer’s	Phenomenological approach	Structured interviews with open-ended questions	Thematic analysis	Participants also varied in their descriptions of how sexual intimacy was affected by the progression of the disease. While some caregivers experienced greater closeness to their partner, others felt certain barriers prevented them from physically connecting with their partner. Overall, couples reported either an increase or decrease in physical and emotional closeness
Davies et al. (2010)	USA	To identify and contrast issues of intimacy and sexuality that spousal caregivers of persons with MMI and dementia may experience and identify future lines of research in this population	14 spouses of partners with dementia	Phenomenological focus groups (transversal, non-randomized)	Questionnaires about intimacy and sexuality	Thematic content analyses	Both groups indicated reduced sexual expression due to physical limitations; substitute activities including hand-holding, massaging, and hugging were noted. spouses caring for people with mild memory loss experienced a less severe negative impact on relational areas compared to dementia group. Decreased intimacy and sexuality due to the patient’s memory loss
Davies et al. (2010)	USA		9 spouses of partners of MMI	Phenomenological focus groups (transversal, non-randomized)	Questionnaires about intimacy and sexuality	Thematic content analyses
Hayes et al. (2009)	USA	To examine how Alzheimer’s affects caregivers' perceptions of change in the identity of their spouse and the ways in which accompanying changes in caregiver identity influence intimate relations	13 male spouses of partners with Alzheimer’s	Qualitative (non-random)	Interviews	Thematic analysis	Identity change on the part of spouses had important implications for intimacy, although not always in adverse ways. The majority of caregiver husbands and wives reported diminished intimacy as a result of the disease. Loss of intimacy is caused by changes resulting from dementia, resulting in caregiver burden and altered marital relationship
Hayes et al. (2009)	USA		15 female spouses of partners with Alzheimer’s	Qualitative (non-random)	Interviews	Thematic analysis

Key: Assessment Scale of Psychosocial Impact of Dementia (ASPID), Clinical Dementia Rating (CDR), Cornell Scale for Depression in Dementia (CSDD), Mild Memory Impairment (MMI), Mini Mental State Examination (MMSE), Questionnaire on Sexual Experience and Satisfaction (QSES), Zarit Burden Interview (ZBI).

Critical appraisal and quality assessment

The nine studies included were examined for methodological quality by two authors using the Mixed Method Appraisal Tool, published by Hong et al. (2018). Table 2 summarizes the quality assessment. No study was excluded based on the evaluation of methodological quality.

Table 2.

Quality appraisal of included articles.

		Dourado et al. (2010)	Sandberg (2020)	Harris (2009)	Sales and Menezes (2017)	Youell et al. (2016)	Shavit et al. (2019)	Harris et al. (2011)	Davies et al. (2010)	Hayes et al. (2009)
Qualitative studies*
1	The qualitative approach is appropriate to answer the research question	—	Y	Y	Y	Y	Y	Y	Y	Y
2	The qualitative data collection methods are adequate to address the research question	—	Y	Y	Y	Y	Y	Y	Y	Y
3	The findings are adequately derived from the data	—	Y	Y	Y	Y	Y	Y	Y	Y
4	The interpretation of results is sufficiently substantiated by data	—	Y	Y	Y	Y	Y	Y	Y	Y
5	There is coherence between qualitative data sources, collection, analysis and interpretation	—	Y	Y	Y	Y	Y	Y	Y	Y
Mixed methods study*
1	Adequate rationale for using a mixed methods design to address the research question	Y	—	—	—	—	—	—	—	—
2	Different components of the study effectively integrated to answer the research question	Y	—	—	—	—	—	—	—	—
3	Outputs of the integration of qualitative and quantitative components adequately interpreted	Y	—	—	—	—	—	—	—	—
4	Divergences and inconsistencies between quantitative and qualitative results adequately addressed	Y	—	—	—	—	—	—	—	—
5	Different components of the study adhere to the quality criteria of each tradition of the methods involved	Y	—	—	—	—	—	—	—	—
Key	Y, yes	—	—	—	—	—	—	—	—	—
*Mixed methods appraisal tool (MMAT), version 2018. Hong et al., (2018)

Data synthesis

The aim of the synthesis was to identify and interpret the main themes identified in the studies included in this review. These themes were identified based on thematic analyses of the studies. Each article was read independently by two authors, and important observations were registered for each study.

The studies were then re-read by the authors to identify the main ideas emerging from the text and a list of key words or phrases was registered that described the meaning of the text. This procedure was undertaken for all of the studies and a final list of emerging themes for each study was prepared. These emerging themes were compared between the studies and the connections between them identified and they were then grouped into areas of similarity. Themes and sub-themes were then derived from these groupings of emergent themes. This procedure resulted in four principle themes and five sub-themes being identified: addressing sexuality and dementia; challenges to maintaining sexuality within the couple relationship (divided into five sub-themes); forms of sexual expression; and the desire to be seen as a sexual being. The listings of key phrases were searched to identify excerpts to illustrate the meaning of each theme or sub-theme, and quotes were checked to the original study to ensure they were not used out of context. The information used in this article was freely available on the internet and did not require ethical secrecy.

Study characteristics

This literature search identified eight qualitative and one mixed method study, published in eight different peer-reviewed journals. Four studies were conducted in the USA, two in Brazil, and the remaining studies in three different countries: Sweden, Israel, and the UK.

The eight qualitative studies in this review comprised two studies that included the couple dyad, the remaining six involved only the spousal care partner. Two studies used focus groups to collect data, while the remaining six used interviews. All the studies adopted thematic analysis to analyze the data. The mixed method study included the couple dyad and collected data from questionnaires and interviews. It used statistical and thematic analysis to analyze the data. For purposes of this review, only the thematic analysis from the interviews has been considered. Five of the studies considered only Alzheimer’s disease in their research and the remaining four considered different types of dementia, including Alzheimer’s.

Addressing sexuality and dementia

Several studies identified that couples have difficulty addressing and articulating concerns regarding the impacts of dementia on their sexual relationship; they often expect health professional to lead inquiries; consequently, sexual concerns often remain silent (Davies et al., 2010; Dourado et al., 2010). The need for help from care professionals to discuss questions of intimacy and sexuality to assist couples negotiate changes in the relationship was highlighted in several studies (Harris 2009; Sales & Menezes, 2017; Youell et al., 2016).

The participants in the research by Sales and Menezes expressed their embarrassment about talking about sex and sexuality, with some participants reluctant to address what sex and sexuality meant to them as care partners: “It’s something that I don’t know. I won’t know how to answer that” (Sales & Menezes, 2017, p. 206). In the study undertaken by Youell et al. (2016), sexuality was identified as a key aspect of relationships affected by dementia, but participants felt it was difficult for them to be heard, and expressed a fear that people might not “want to know” about it. Talking about sex and articulating sexual needs were shrouded in discomfort, particularly for women, with some participants expressing their understanding of sex as being “just for men.”

Challenges to maintaining sexuality within the couple relationship

The majority of the studies identified that sexual expression and sexual activity between the couple became more difficult as the illness progressed, with many couples reporting changes in sexual activity and satisfaction, and that living with dementia had negatively impacted expressions of intimacy (Dourado et al., 2010; Hayes, Boylstein & Zimmerman, 2009; Harris et al., 2011; Sales & Menezes, 2017). Overall, the majority of the studies concluded that continued physical intimacy and sexual contact with someone who has dementia is not a straightforward or simple matter. Several factors were identified in the studies that contributed to the challenges to maintaining sexuality within the relationship.

Change of roles from partner to carer

The change of roles in couples’ relationships was considered to be an important factor that represented a challenge to maintaining sexual activity and sexual satisfaction for couples living with dementia (Davies et al., 2010; Dourado et al., 2010; Hayes, Boylstein & Zimmerman, 2009).

Several partners of people with dementia reported experiencing a change in roles from a spousal relationship to a parent–child interaction, which had significant impacts on sexual desire (Davies et al., 2010; Hayes et al., 2009). The marital and caring relationships become intertwined, and sexual intimacy with a partner who is viewed as childlike becomes a contradiction. Female care partners who no longer had husbands who could perform what was understood as male gender roles became disinterested in sexual intimacy (Hayes et al.,2009). This was also evident in the more recent study of Sandberg (2020): “He doesn’t feel like my husband. More like a child. But not quite like that either.” (Sandberg, 2020, p. 13).

Care burden and exhaustion

The physical demands from being a care partner created a heavy burden for a lot of care partners, which was identified in several studies as directly impacting sexual activity and satisfaction (Dourado et al., 2010; Harris, 2009; Harris et al., 2011; Hayes et al., 2009; Sandberg, 2020). The strains of additional responsibility and constant care meant that intimacy did not have a priority in the relationship, expressed in the words of a male care partner: “I was so busy getting things done, things I’d never done before. I was tired at the end of the day… sex is the last thing I am thinking about.” (Harris, 2009, p.70) and a female care partner: “So that’s the thing, I am no longer a woman but a carer.” (Hayes et al., 2009, p. 56).

Sadness and anger

Feelings of sadness and anger were also expressed in the studies as creating barriers to sexual intimacy between the couple. The majority of the care partners expressed sadness and loneliness at the loss of intimacy (intellectual, physical, and emotional) in their relationships and experiencing their partners as strangers caused distress and confusion about initiating sexual activity (Davies et al., 2010; Dourado et al., 2010; Hayes et al., 2009; Sandberg, 2020; Youell et al., 2016).

Anger was also expressed by the persons with dementia and also attributed to the difficulty in maintaining sexual intimacy. Participants expressed a great deal of frustration, anger, and disappointment with the changing relationship, anger with themselves and their spouses for their difficulty in accepting the changes in them (Harris 2009; Sandberg, 2020). The anger and aggression, associated to a lack of confidence caused by Alzheimer’s disease, in the words of a person with Alzheimer’s: “destroyed the sexual desire.” (Sandberg, 2020, p.11).

Bodily functions

The male care partners participating in the study by Hayes et al. (2009) identified that changes and limitations in bodily functions and changes in physical appearance significantly contributed to loss of intimacy. The functional loss in bowel and bladder management and assisting with toileting compromised the way they viewed their spouses, and they defined their wives as “less sexy,” and not being a “woman first” (Hayes et al.,2009, p. 53).

Repressed sexual needs by carers

Some studies also identified that carers tended to repress their own sexual needs (Harris 2009; Sales & Menezes, 2017). In the words of one participant in the study by Sales: “Ah, my (sexuality) I have forgot it, I put it in a very deep hole and buried it. You forget it.” (Sales & Menezes, 2017, p. 208), and another participant stating: “I no longer feel these needs. This is because I asked God to take it away from me, so that I don’t feel anything.” (p. 208).

Forms of sexual expression

Several of the participants in the studies associated sexual expression with penetrative sexual activity and sexual satisfaction with sexual intercourse (Dourado, 2010; Sales & Menezes, 2017). However, it was also evident in some studies that some couples sought different ways to express their sexuality and intimacy. In some cases, care partners stated that there was less physical sexual intimacy, but they were still intimate, with demonstrations of intimacy expressed through hand-holding, kissing, cuddling, and touching (Davies et al., 2010; Harris, 2009, Sandberg, 2020; Shavit et al., 2019). The older couples in the study by Sandberg (2020) stated that the increase in touching and the move away from penetrative sex was seen as part of normal aging. Older couples in the studies referred to touch and bodily intimacy as being pleasurable and enjoyable in their own right, with partners adopting strategies to maintain intimacy and enjoying the gentler and affection aspect of the intimacy (Harris et al., 2011; Sandberg, 2020).

Desire to be seen as a sexual being

Only three of the studies included the perspective of the person with dementia (Dourado et al., 2010; Harris, 2009; Sandberg, 2020). Two of these studies reflected the wish of the participants to be acknowledged and considered desirable as sexual partners, despite the illness. The importance of intimacy and sexuality for maintaining one’s subjectivity was identified in the study by Sandberg (2020), with one male partner aged 78, stating how he still enjoyed sexual intercourse, and another male partner understanding his intimate relationship as “very important” since it demonstrates “some kind of recognition” (Sandberg, 2020, p. 8).

The studies also highlighted the impact on self-worth and feelings of rejection when their partners withdraw from sexual intimacy. One male participant, in the study by Harris (2009), stated: “It’s just maybe she thinks I’m not going to develop into anything, so why bother?” (Harris, 2009, p. 70).

Discussion

This article examined qualitative studies researching the impact of dementia on the sexual intimacy of the couple relationship; in the majority of cases, from the perspective of the spouse without dementia, and in three studies, from the perspective of both partners of the couple dyad. The studies in the review identified that significant changes occur in the couple relationship, including the intimate sexual relationship, when a couple receives a dementia diagnosis.

Research is beginning to stress the importance of moving beyond the predominant problem-based perspective that the relationship of the couple living with Alzheimer’s is solely burdensome and problematic (Bielsten et al., 2018; Youell, 2015). It is evident that the relationship has to face continual challenges; however, how the couples perceive and preserve the meaning of their loving, intimate relationship may be the most important factor that motivates couples to face these challenges (Daniels et al., 2007; Kaplan, 2001; Shavit et al., 2019; Youell, Callaghan & Buchanan, 2016).

Receiving a dementia diagnosis has an impact on all areas of the couple relationship over the course of the illness. Adjusting to this diagnosis and sustaining a couple identity often mean that new ways of coping have to be developed (Merrick et al., 2016). The loss of a shared understanding of the meaning of the couple dyad and a sense of individual identity of both spouses can represent a significant challenge to the quality of the relationship (Merrick, Camic & O’Shaughnessy, 2016).

The research has identified that, in general, professionals are often reluctant to address the question of sexuality when dealing with aging couples and couples living with dementia, and couples seldom raise questions related to sexual issues, mainly due to discomfort or embarrassment (Eloniemi-Sulkava et al., 2002; D’cruz et al., 2020). However, the importance and need for more discussions about the physical and intimate needs of persons with dementia are consistently being recognized as essential for understanding the lived experience of dementia in all of its dimensions, and to help couples negotiate the challenges and also seek alternatives to achieve intimacy and sexual satisfaction (Davies, 2010; D’cruz et al., 2020; Eloniemi-Sulkava et al., 2002). Furthermore, from the research, it is evident that the understanding of sexuality and sexual expression is often restricted to sexual practices such as penile–vaginal intercourse. Sexual scripts, even for older persons, place penetrative sexual activity as the gold-standard (Dourado et al., 2010; Gewirtz-Meydan et al., 2018); consequently, other kinds of sexual behavior throughout the ageing process have been neglected in the research and viewed as less significant or non-sexual (Dourado et al., 2010; Holdsworth & McCabe, 2018; Sinković & Towler, 2019).

When persons with dementia are recognized as sexually active, their intimate sexual relationships are then validated, and the scope of research can develop to consider how couples negotiate these relationships after the diagnosis. More recent research seeks to understand the congruent and divergent experiences of sexuality and intimacy more fully among couples living with Alzheimer’s and the challenges and changes they face (Pinho & Pereira, 2019; Youell, Callaghan & Buchanan, 2016).

Normalizing sex and alternative forms of sexual expression are important moves towards developing a more open approach that may contribute towards the destigmatization of sexuality between couples living with dementia (Davies et al., 2010; Dourado et al., 2010; Wright, 1998; Youell, Callaghan & Buchanan, 2016).

A significant limitation of several of the published studies is that they only listened to the spouses without dementia; therefore, they only provided insight into the impact of dementia and the lived experience from the perspective of the care partner (Harris et al., 2011; Hayes, Boylstein & Zimmerman, 2009; Sales & Menezes, 2017; Shavit et al., 2019; Youell, Callaghan & Buchanan, 2016). In order to understand the lived experience of how relationships are affected by dementia, more recent research has understood that a more dyadic perspective is necessary, which includes the voices of both partners, to better understand the dementia experience and develop interventions aimed at improving the quality of the relationship, including the sexual relationship (Braun et al., 2009; Daniels et al., 2007; Hartmans, Comijs, & Jonker, 2015; Merrick, et al., 2016; Sandberg, 2015; 2020).

Conclusion

It is evident from this review that a dementia diagnosis impacts the intimate relationship of the couple. Although there is more awareness of the complex issues surrounding sexuality and aging, the psychosocial questions that arise when we include dementia still need to be addressed. Adopting a more inclusive approach may contribute towards challenging assumptions about sexuality in relationships affected by dementia and developing a more comprehensive view of persons and couples living with the illness. From the review of the current literature, there is limited research into how the dynamics of the intimate sexual relationship of couples living with dementia is impacted, and how sexual needs are expressed and negotiated within this relationship. Despite the move towards the concept of couplehood in dementia research, little has been researched in the area of sexuality and physical intimacy, thus highlighting the need to explore this area further and to address the sexual health issues faced by older persons, including those with a dementia diagnosis.

Footnotes

Acknowledgments

The authors wish to thank Patricia Mary Squire for her valuable suggestions and Oliver Freiberg for his invaluable assistance during the preparation of this article.

Declaration of conflicting interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the Coordenação de Aperfeiçoamento de Pessoal de Nível Superior.

ORCID iD

Susan Carol Albert

Susan Carol Albert has a masters in clinical psychology and doctorate in Health Sciences from Jundiai Medical University and works as a clinical psychologist in private practice in Brazil. Her research interests include intimacy and sexuality in couple relationships, and female and male expressions of sexuality and intimacy.

José Eduardo Martinelli has a masters in gerontology and a doctorate in education in the area of human development and psychology. He coordinates geriatric and gerontology studies at Jundiai Medical University. His main area of research focuses on the clinical aspects of dementia.

Maria Silvia Costa Pessoa has a doctorate in clinical psychology and works in private practice in Sao Paulo, Brazil. She lectures on Analytical Psychology at UNIP and coordinates studies in death and bereavement at SBPA (Brazilian Society for Analytical Psychology).

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