Dementia and Family Dynamics
It may be hard to imagine, but for some families, dementia has a silver lining. The diagnosis may bring families closer as members work together to solve a common challenge. It forces intimacy when bodily functions become less personal. And it can cause relatives to depend on each other for emotional support.
More often, though, dementia sparks conflict, guilt, grief, sacrifice, uncertainty negative emotions that can affect the quality of life for the person with dementia and their loved ones. Studies show that more than most other diseases, dementia increases stress and decreases mental health and well-being in caregivers for a variety of reasons:
• Caring for someone with dementia is difficult, time-consuming, and may necessitate the caregiver leaving their job and abandoning hobbies and relationships.
• Dementia can be isolating because it’s so individual.
• The progressive and unpredictable nature of dementia makes planning difficult, increasing uncertainty and anxiety.
• Many family members experience guilt when caring for someone with dementia, wondering if they’re doing enough for their loved one.
• Adult children of people with dementia may find themselves bathing, dressing, and feeding their parents. The resulting sense of loss can cut both ways: Adult children grieve the parent they knew, and the person with dementia depending on how lucid they are may grieve the effect their diagnosis has on their children.
• Frustration can arise when the care recipient is unable to express gratitude.
You may be dealing with these stressors and/or others, making your experience with dementia far from any silver lining. If that’s the case, here are some ideas to help maintain your well-being and navigate the land mines of family dynamics and dementia.
Remember that what you’re experiencing is normal. All your emotions are shared by millions of loved ones around the world. You may feel alone you’re not.
Stay flexible. Dementia is not fixed. The disease evolves and changes so what you’re handling right now may change next week. Try not to fixate on one way of doing things.
Be patient. This is easier said than done. But try to keep in mind that your loved one isn’t intentionally being difficult. The best care you can provide is a healthy dose of patience.
Ask for and offer help. If you’re in over your head, ask your family for support. Try to make your requests specific versus open-ended: “I need someone to do the grocery shopping. I need you to take mom to the doctor on Tuesday. I need coverage on Wednesday so I can take a day off.” Remember that if you need help, other family caregivers may need support as well. Check in and see how everyone is doing and what might make it easier for everyone.
Communicate. Consider weekly family meetings to discuss the latest developments and who’s handling what.
Consider an intermediary. When tensions run high in already fraught situations, the results can be explosive. Try to diffuse the situation before it gets to that point by using an intermediary to negotiate with difficult family members if disagreements about care seem insurmountable.
Hire support if necessary. Bring in professionals if you need to. Professional caregivers, housekeepers, personal assistants, and others can relieve you of the burden of care when it gets too heavy.
Take care of yourself. Studies show that caregivers who adapt to stress share two qualities: optimism and resilience. Resilience is the ability to cope effectively and adapt. Optimism is the expectation of a positive outcome in the face of adversity. Ask yourself what you can do to increase these qualities in yourself. Regular exercise? Time away? Professional support? Banish the misconception that self-care is selfish: you simply can’t take care of your loved one unless you first take care of yourself.
Caring for someone with dementia is especially hard when family dynamics are unhealthy. The most important thing you can do for your family, yourself, and your loved one is to work together and support each other. Quality of life is possible if you know how to create it.
A guideline for navigating changes in Family Dynamics
In order to cope with the change in dynamics, it’s important to face everything as a family with open communication, understanding and compassion. This battle is different for everyone, so it’s important to do what you can to help one another. To help you navigate the changes, keep some of the following points in mind.
Adjusting will not happen overnight.Just because you now know about the disease and have a plan in place doesn’t mean you know everything there is to know. Alzheimer’s disease affects families and their loved ones differently, so your “normal” may change multiple times through the course of the disease. Take time to adjust and give yourself – and other family members – some grace.
People generally work better in numbers.If you or another family member need help with caregiving tasks, ask for help or step in to help. Is a family member having an emotionally hard time dealing with the diagnosis? Reach out and help them. Are household tasks getting put on the backburner? Take some time to help them clean.
Make sure everyone is on the same page.Again, communication is key. If your loved one is getting worse, tell your family. If there is something they need to step up and do, ask your family to help with it. If you learn something that makes your loved one with Alzheimer’s feel better, share that with other family members. Be a team and communicate to be better caregivers.
“If you and your family are having trouble coping with your loved one’s diagnosis, reach out for help and support,” says Peggy. “Joining support groups, talking to a counselor or pastor, or seeking out options for care can help to make your journey through Alzheimer’s disease easier.”
Siblings disagree about how much care is needed
Adult siblings don’t always see caregiving needs the same way. One child may have the impression that a parent is doing fine at home, while another feels that the parent needs extra help. This is especially common if family members are spread out geographically or spend different amounts of time with the aging loved one.
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!
The Help You Need in a Memory Care Facility
As with all Stonegate Senior Living-supported properties, the staff at Pathways Memory Care know how to help families navigate the troubled waters to find the support they need. They understand that dealing with the progressive disease can become overwhelming.
Take, for example, Dawn Revere, who gave up her job to look after her husband, who contracted early-onset Alzheimer’s, at age 50, and finally succumbed four years later. “This experience caused me to be an emotional wreck, but I knew I couldn’t fall apart,” Dawn says in her testimony on the Alzheimer’s Prevention Registry. “I was his rock. I did everything I could to protect him and give him the best care possible.”
Providing care to a loved one with dementia can become too much for many people. Statistics show that seniors with dementia are three times more likely to be hospitalized or go to a specialized senior care facility than those without. They wind up requiring the kinds of professional long- term support and services just not possible for most untrained family members to provide.
At Pathways Memory Care, they rely on Warchol Best-Abilities Care Model to ensure a “loved one is able to live to his or her emotional, spiritual, and functional potential at every stage of dementia.” As with all Stonegate memory care facilities, it provides special programs to slow down memory loss and enhance quality of life for every stage of the resident’s experience of Alzheimer’s or dementia.
Tips for families
Listen to each family member with respect. Coping with a progressive illness, such as Dementia or Alzheimer’s, can be stressful — and not everyone reacts in the same way. Family members may have different opinions. Some relatives may deny what is happening; a long-distance relative may be resented for living far away; or there may be disagreement about financial and care decisions, especially at the end-of-life. These issues are complex and require ongoing discussions. Give everyone an opportunity to share their opinion and avoid blaming or attacking each other, as this will only cause more hurt.
Discuss caregiving responsibilities. Talk through caregiving roles and responsibilities. Make a list of tasks and include how much time, money and effort may be involved to complete them. Divide tasks according to the family member’s preferences and abilities. Some family members may be hands-on caregivers, responding immediately to issues and organizing resources. Others may be more comfortable with being told to complete specific tasks. Consider setting up an online care calendar to coordinate helpers.
Continue to talk. Keep the lines of communication open. Schedule regular meetings or conference calls to keep everyone involved up-to-date. Discuss how things are working, reassess the needs of the person with Alzheimer’s, and decide if any changes in responsibilities are needed. Plan for anticipated changes as the disease progresses.
Cope with changes and loss together. As Alzheimer’s progresses and cognitive abilities change, it is normal to experience feelings of loss. Caregivers and family members may want to seek support from others who are dealing with similar situations. Attend a support group in your area or join our ALZConnected online community.
Seek outside help. If tensions and disagreements are ongoing, you may want to seek help from a trusted third party, such as a spiritual leader, mediator or counselor. Sometimes, an outside perspective can help everyone take a step back and work through the difficult issues.