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Intimacy is a natural need of human life from birth and throughout life.
It is the giving and receiving of love and affection, caring touch, empathic understanding, comfort in times of need and a feeling of safety in relationships. The need for closeness is a very important part of people's lives.
However, for all of us the way in which we express our need for intimacy, will vary with our individual characters and life experiences.
People with dementia continue to need caring, safe relationships and touch.
However, they too will vary in their individual ways giving and receiving affection, and in the way in which their dementing condition affects that capacity.
For example, some people with dementia may dislike being touched, and changes may need to be made in the way in which closeness and affection are expressed. As a result of the disease process some people with dementia may also become demanding and insensitive to the needs of others and less able to provide caring support for their family and partners. This can be a great source of loss and distress for Caregiver.
Sexuality - the feeling of sexual desire and its expression though sexual activity - is also a natural expression of a human need.
However, for most people it goes beyond the narrow concept of sexual intercourse, and is bound up with many of the broader expressions of intimacy, including physical closeness, kissing and hugging.
People with dementia may experience a variety of changes in their expression of sexuality.
Some continue to desire sexual contact, others may lose interest in sexual activity and others may for a short time display inappropriate sexual behavior. These changes also carry an emotional cost for Caregiver.
Despite the the fact that our humanity is inextricably bound up with our need for intimacy and our sexuality, the literature of ageing, long term care and dementia has tended to avoid these topics or to cover them with unhelpful brevity. However, there are some helpful resources available.
The need for closeness does not cease when one partner develops a dementing illness, but changes may be felt in the way the need is expressed. For some couples, sexual activity is unaffected in the early stages of the disease process, and they may even feel more loving and close. Other couples may be able to keep their relationship affectionate despite a decrease in the quality of sexual activity. Later in the disease more major adjustments may be required.
Alzheimer's challenges couples' closest ties. Alzheimer's Association National Newsletter, 15(2), Summer 1995, pp. 1, 7. [Format: Journal article] --This looks at some of the ways in which Alzheimer's disease can affect couple relationships. It includes quotes from Caregiver and makes suggestions about dealing with inappropriate behavior.
Alzheimer's disease: a guide for families / Lenore S. Powell, Katie Courtice. - Reading, Mass.: Addison-Wesley, c1983, pp. 64-67, 126-128. --Discusses the changes in the quality of the couple relationship and the effects which may be felt by family Caregiver, as well as inappropriate behavior which can occur.
Alzheimer's disease: coping with a living death / Robert T. Woods. - Souvenir Press, 1989, pp. 83-85. [Format: Book] --This includes a broad look at changes to the marital relationship and suggests that Caregiver who are experiencing difficulties seek professional counseling.
A thousand tomorrows: intimacy, sexuality and Alzheimer's. - Terra Nova, 1995. [Format: Video] --In this video couples discuss the changes Alzheimer's disease has brought to their relationships, in terms of intimacy and sexuality. An excellent video for Caregiver and support groups.
The 36-hour day: a family guide to caring for persons with Alzheimer's disease, related dementing illnesses, and memory loss in later life / Nancy L. Mace, Peter V. Rabins. - Rev. ed. - Baltimore: Johns Hopkins University Press, c1991, pp. 130-133, 279-281. [Format: Book] --This book for family Caregiver discusses inappropriate sexual behavior in the home and in nursing homes. It points out that these behaviors are actually rare in people with a dementing illness. © Alzheimer's Australia NSW Inc. Updated July 2002
Sexuality and dementia: Caregiver' perspective / Dementia Services Development Centre. - Stirling: Dementia Services Development Centre, [1996?]. [Format: Video] --In this video a group of Caregiver, (three spouse Caregiver and one woman who cares for her mother) discuss the effects of dementia on relationships, affectionate behavior and sexuality.
Assessments of institutionalized dementia patients' competencies to participate in intimate relationships / Peter A. Lichtenberg and Deborah M. Strzepek. The Gerontologist, 30(1), 1990, pp. 117-120. [Format: Journal article in special interest folder] --This paper describes the assessment technique used to assist staff in determining whether to allow particular residents to develop affectionate and/or sexual relationships.
Dementia with dignity / Barbara Sherman. - Rev. ed. - Sydney: McGraw-Hill, 1994, pp. 103-107. [Format: Book] --Gives a good discussion of some issues concerning sexuality and dementia, with practical case examples. The section on handling problem behavior (pp. 66-75) is also relevant.
Intimacy: nursing home resident issues and staff training / Carly R. Hellen. American Journal of Alzheimer's Disease, March/April 1995, 10(2), pp. 12-17. [Format: Journal article] --Despite the title of the article, this paper looks mainly at issues surrounding sexuality in nursing homes. It makes suggestions for gathering preadmission information, dealing with excessive masturbation, working with families and staff training.
Management of sexual relationships among elderly residents of long-term care facilities / by Meredith Wallace. Geriatric Nursing, 13(6), 1992, pp. 308-311. [Format: Journal article in special interest folder] --This paper describes a protocol for assessment and management of relationships between residents in long term care. It is not dementia specific.
Sexuality and dementia: a guide / by Carole Archibald. Illustrated by Anne Rodger. - Stirling, UK: University of Stirling, 1994. [Format: Book] --This book would be very useful in staff training. It provides a practical framework for addressing issues of sexuality in long term care. Case studies for discussion are included. This can be used with the kit "Sexuality and dementia: video and training handbook". © Alzheimer's Australia NSW Inc. Updated July 2002
Management of Inappropriate Sexual Behavior
Some people with dementia may retain sexual desires despite advancing dementia. Where the person with dementia is able to satisfy these needs appropriately, this does not present a problem. However, there are some circumstances where their behavior will be, or will be perceived to be, a problem.
Literature in this area suggests that some behavior which is interpreted as sexually inappropriate may have another explanation. For example, a person rearranging their clothing may need to go to the toilet. Whatever the explanation for their behavior, it may help to remember that the underlying cause is always found in the changes to the brain caused by the dementia. They are not deliberately seeking to hurt or annoy others. In many cases too, gently discouraging the behavior or redirecting the person with dementia to another activity may be sufficient.
Management of sexually disinhibited behavior by a dementia patient / P. Alexopoulos. Australian Journal on Ageing, August 1994, 13(3), pp. 119. [Format: Journal article] --This case study describes the successful use of cues to modify inappropriate sexual behavior in resident with vascular dementia.
Person to person / by Tom Kitwood and Kathleen Bredin. - Loughton, Essex: Gale Centre, 1992, pp. 49-50. [Format: Book] --This brief discussion suggests a gentle and accepting approach to the problems raised by sexually inappropriate behavior.
Alzheimer's disease and marriage: an intimate account / Lore K. Wright. - Newbury Park, Ca.: Sage Publications, c1993. --This book discusses the results of 3 years research contrasting the experiences of healthy older couples with the lives of couples with one partner affected by Alzheimer's disease. Quotes directly taken from the in-depth interviews are given, and the topics covered include companionship, affection and sexuality.
Questions of intimacy: video and guidelines / Alzheimer's Association Victoria. Video produced by Open Channel. Guidelines written by Wendy Taylor, Maria Pavlou and Delys Sargent. - Hawthorn, Vic.: Alzheimer's Association Victoria, 1995. [Format: Kit; Video; Book] --This kit aims to promote discussion among counsellors and Caregiver of people with dementia on issues of intimacy and sexuality and to develop competencies in health professionals to work in that area. It covers intimacy more than sexuality. It is primarily helpful for professional counsellors, residential care staff and educators. It may also be helpful in a support group setting. © Alzheimer's Australia NSW Inc.
Sexual behavioral changes in Alzheimer disease / Christian Derouesne...[et al]. Alzheimer Disease & Associated Disorders, Summer 1996, 10(2), pp. 86-92. [Format: Journal article] --The aim of this study was to assess the frequency and type of sexual behavioral changes in a group of people with Alzheimer's disease living in the community.
Sexuality/intimacy and how we talk about 'it' / Wendy Taylor. IN Practical solutions in dementia care / Alzheimer's Association Australia. - [Brisbane]: Alzheimer's Association Australia, 1995. pp. 70 + [Tape 2]. [Format: Conference proceedings summary; Audiocassette contents ] --Discusses the need for counsellors and other health professionals to be trained in personal awareness and sensitive handling of intimacy and sexuality issues, to assist Caregiver in an exploration of their needs and concerns.
THE CAREGIVER ROLE
What is a Caregiver
The Caregiver Defined
Who Do Caregivers Care For
Accepting the Reality of Dementia
6 Steps to Successful Caregiving
Caregiver's Are Not Alone
Asking For & Getting Help
The Caregiver Code
Rights of a Caregiver
Unmet Needs Of A Caregiver
Caregiver And Work
Feelings And Caregiver Stress
Questions & Answers
STRESS, COPING & FEELINGS
The Caregiver Code
Rights of The Caregiver
Coping With Stress
Feelings And Caregiver Stress
Stages Of Alzheimer's
Helping Children Understand
Protecting Yourself From Burnout
Making Time For Reflection
How is Competency Defined?
Power of Attorney
What is an Advanced Directive?
Do I Really Need a Will or a Trust?
Importance of Communication
Communicating With Someone Who Has Alzheimer's
Your Approach Sets The Tone
Think Before You Speak
Doing Tasks Together
Having Trouble Being Understood
Things NOT To Do
When It Just Fails
TIPS AND ISSUES
New To Family Caregiving?
Tips For Dealing with Aggression
Places To Turn For Caregiver Supoort
Take Advantage of Community Support
Random Tips From Other Caregivers
Providing Long Distance Care
When To Stop Driving
Dealing With Family Conflict
Tips on Sundowning
Helping Children Understand
Pet & Toy Therapy
Tips For Medical Appointments
Dealing With Resistance
Tips For Day To Day
Intimacy And Sexuality
Visiting A Person With Dementia
Music And Dementia
Tips For Holidays And Gatherings
Art as Home Therapy
RESEARCH & DONATIONS