Understanding how your relationship may change

How relationships change

Alzheimer's disease does not change a person’s need for love and affection, but it changes many aspects of a relationship. You may lose the companionship of someone who has been close and important to you. You’ll need to find different ways to express your feelings.

Alzheimer's disease can also affect the sexual relationship of partners. It can change a person's interest in sex, either increasing or decreasing it. This may create a problem. For example, the person may put demands on you for more sex than is wanted.

A person with dementia may be overly affectionate at the wrong time or place. If this happens, explain the disease and its effects to the people involved to help them understand.

You may also find your role in your relationship has changed. Perhaps the person always looked after the family’s finances and this task has now fallen to you. Making decisions about financial and legal matters may be overwhelming. You may need to ask family members, friends or professionals to help you.

You may also find that your relationships with friends and family have changed. Perhaps they hesitate to spend time with you because they’re not sure what to say or may worry about the person’s behaviour. You may need to be the one to contact friends and family members. Suggest the best way to communicate with your family member with dementia, such as what to expect or activities they may still enjoy together. This may help you keep these sources of support close to you and the person you care for, at a time when you most need them.

Providing care for someone close to you can create new sources of stress in the rest of the family. Other family members may not be able to accept the person’s illness; you may resent the lack of help from other family members who don’t feel able, for whatever reason, to help out. You may also disagree on decisions about finances and care. It’s most helpful if these concerns can be acknowledged and addressed. You can do this through holding a family meeting, accepting that you will not all agree, sharing responsibility for care (even if it’s not an equal share), and continuing to communicate so that family members don’t feel left out.

The Alzheimer Society can help; don’t try to do this alone!

Impact of the disease

Alzheimer’s disease and other dementias have a deep impact not only those who are diagnosed, but also on the people who are closest to them. Family members have to take on different responsibilities when a relative is diagnosed with dementia. Sons and daughters of a parent with dementia may become caregivers and husbands and wives of the person with dementia see their roles change. They often find themselves in the role of primary caregiver.

As Alzheimer’s disease progresses, you or others in your family may find the changing roles tough to accept. It may become harder when roles change in some ways, but not in others. When this happens, it can lead to some confusion about how to act. It sometimes takes a while to figure out just who will do what.

The family member with dementia usually becomes the family’s centre of attention. A Energy is focused on this person. This can lead to other family members, including spouses or other children, feeling neglected. They may become resentful because they feel they are not getting the attention they need.

Some people have to take over everyday things, like chores, and they may feel burdened. The result can be that they may withdraw, avoiding family activities, or in the case of married people, they may end up getting divorced.

It is important to remember that different people react to the same situation in different ways. Some people will not be helpful at all and will put distance between them and the family. This is often because they feel that cannot cope with the changes. However, some people who care for a family member with dementia find that their families experience a new kind of closeness, as they work together to deal with stressful situations. Some people even show strengths that they never knew they had.

Impact on family and friends

For all family members

Some of the most common feelings families and caregivers experience are guilt, grief and loss, and anger. Rest assured that you are not alone if you find yourself feeling these, too.

Guilt

It is quite common to feel guilty—guilty for the way the person with dementia was treated in the past, guilty at feeling embarrassed by their odd behaviour, guilty for lost tempers or guilty for not wanting the responsibility of caring for a person with dementia.

If the person with dementia goes into hospital or residential care you may feel guilty that you have not kept him at home for longer, even though everything that could be done has been done. It is common to feel guilty about past promises such as “I’ll always look after you,” when this cannot be met.

Grief and loss

Grief is a response to loss. If someone close develops dementia, we are faced with the loss of the person we used to know and the loss of a relationship. People caring for partners may experience grief at the loss of the future that they had planned to share together.

Grief is a very individual feeling and people will feel grief differently at different times. It will not always become easier with the passing of time.

Anger

It is natural to feel frustrated and angry—angry at having to be a caregiver, angry with others who do not seem to be helping out, angry at the person with dementia for her difficult behaviours and angry at support services.

Sometimes you may even feel like shaking, pushing or hitting the person with dementia. Feelings of distress, frustration, guilt, exhaustion and annoyance are quite normal. However, if you feel like this, or worry that you could lose control, it is important to discuss your feelings with someone such as your doctor or a staff person from the Alzheimer Society.

Don’t forget the children and teens

With so much focus on the person who has dementia, sometimes younger family members don’t get the attention they need, or the illness is not explained in a way they can understand.

Children often experience a wide range of emotions when a parent or grandparent has Alzheimer’s disease. Younger children may be fearful that they will get the disease or that they did something to cause it. Teenagers may become resentful if they must take on more responsibilities or feel embarrassed that their parent or grandparent is “different.” College-bound children may be reluctant to leave home.

Reassure young children that they cannot “catch” the disease from you. Be straightforward about personality and behaviour changes. For example, the person with Alzheimer’s may forget things, such as their names, and say and do things that may embarrass them. Assure them that this is not their fault or intentional, but a result of the disease.

Find out what their emotional needs are and find ways to support them, such as meeting with a counsellor who specializes in children with a family member diagnosed with Alzheimer’s disease. School social workers and teachers can be notified about what the children may be experiencing and be given information about the disease. Encourage children and teens to attend support group meetings, and include them in counselling sessions.

Have the person with Alzheimer’s disease record his thoughts, feelings and wisdom to "be with them" as they experience important events in their lives (graduations, dating, marriage, births and deaths).

There is a lot to think about when caring for someone who has Alzheimer’s disease or a related dementia. But there are ways you can help yourself or get others to help you.

Here are some examples that might help you cope with role changes within the family:

Ask for help

Sit down with the members of your family and ask what they are willing to do to help. Give them ideas and suggestions. Don’t just assume that they know what you need. They can’t read your mind, and they may already be doing what they think is helpful. Assume that most people are doing the best they can under the circumstances. While this is not always the case, most often it is.

Recognize that you are dealing with a stressful situation. Some people overlook the problems they are experiencing because they slowly take on more and more responsibility.Recognize all that you have taken on and congratulate yourself on what you have been able to do. Then see about getting any help you might need.

Keep family members informed

This can be done in different ways. You can call and talk to people individually or you can write a family newsletter. Copy the letter and send it to different members of the family so you don’t have to rewrite the same information to each one. Just remember, if you keep the lines of communication with your family and friends open, they will be able to understand more easily what you and your family member are going through. The better they understand, the more willing they’ll be to pitch in and help.

Caregiving isn’t easy, and it’s important to make sure your aging family member does not take up all your energy. Make sure you find ways to pull together as a family and work together for everyone’s benefit.

Impact on couples

When one of a couple is diagnosed with Alzheimer’s disease or a related dementia, it can be hard for the partner to know what to do, how to act. It’s important to remember that couples have a long history and strong emotional bonds, and this plays a role in how they act and react to a partner who now has dementia. Here are some ideas for couples dealing with a partner being newly diagnosed:

You have dementia or your spouse has dementia. Although it is a part of your life, it is not who you are. Allowing it to take over will not help you cope with it. People with chronic diseases are often told to stay positive. To be realistic, this is not always possible. Make sure you have someone to talk to. Communication will help you get through this. Life can be frustrating, and a diagnosis of Alzheimer’s disease or a related dementia can create aggravation, sadness and, sometimes, anger. You need to keep in mind what is important to you and what you do have control over.

So how do you let go of things outside your control? Find the things that bring you joy or a sense of happiness and seek them out.
While it may seem tough sometimes, make time for the activities you and your spouse can still enjoy. A new diagnosis can feel like an unwelcome visitor. Find the activity where this “visitor” is left waiting at the threshold and not invited in.

For example, continue travelling if this was something you loved to do and you can still do it. Enjoy seeing new things or revisiting old places. Unlike being at home, being out doing new activities takes you out of the setting where the disease is. Something as small as “let’s go for a walk” can lead you into a space in which you and your spouse can just enjoy the outdoors—and one another. It can also become a way to deal with the frustration, by leaving it behind for a few moments and coming back to it with a new perspective.

Remember to plan ahead, too. While enjoying life, make certain to plan for your future: look ahead for medical and financial concerns beforehand. Set up meetings now with an attorney, financial planner or family members so that the wishes both of you have are known and in writing.

Intimacy

Everyone has a need for companionship and physical intimacy. People with Alzheimer's disease or other dementia are no different. They may fill this need through marriage, partnership or friendship. Changes to the need for closeness and physical intimacy brought on by the disease will affect any relationship.

Expressions of physical intimacy between two people can range from a handshake and pat on the back between two colleagues, to hugs and strokes between friends, to sexual relations between lovers. The more intimate the forms of expression, the greater the need for privacy.

Relationships with partners are unique. Each person chooses the other for different reasons. Relationships can be straightforward or complex. Regardless of the type of relationship, it is important that it is satisfying for both people.

When one person has dementia, couples are often able to continue to have a close, intimate relationship for many years. When changes do affect the physical relationship, it is important to remember that every couple deals with these changes in their own way.

Note: For ease of reading, the term "partner" is used here to refer to the person with whom the person with dementia shares companionship and physical intimacy. This could be a spouse, partner, lover or friend.

Helpful suggestions

The needs for companionship and physical intimacy of people with Alzheimer's and their partners should be met, wherever possible, and treated with respect and dignity.

When the physical intimacy needs of the people in the relationship differ, open and honest discussion and creative thinking may help find ways to meet each person's needs.

As the disease progresses, people with Alzheimer's may no longer recognize their partners. The partners will need a lot of support and understanding. If the person with Alzheimer's disease chooses a new partner, it is important that both participants agree to the new relationship.

Family members and long-term care staff need to think about their own feelings and attitudes toward sexuality and later-life relationships. Also, learning about a person's patterns of sexual expression and intimacy over a lifetime may give insight into current behaviour.

Staff in long-term care facilities may also need to find ways to provide privacy or to help partners deal with changes in their relationships. This can include:

• Finding enjoyable activities a partner can share with the person during visits
• Drawing attention away from a new relationship that might upset a partner
• Providing overnight private accommodation for couples wishing to be alone.

Some partners of people with Alzheimer's disease may want to meet their companionship and physical intimacy needs with someone else, especially if the person with dementia no longer recognizes them. If so, they will need support and understanding to work through their feelings and to find ways of meeting their needs that make them comfortable.

Relationships are complex at the best of times. Add to this the changes brought on by Alzheimer's disease and these are the dilemmas that partners and families face. Talking about intimacy and sexuality is not always easy. But it is a good starting point for resolving issues relating to companionship, intimacy and sexuality in Alzheimer's disease.