How Dementia Changes Families and Couples
When dementia effects one person, it can effect the entire family.
Often a dementia diagnosis is like a snowball, it starts with a small action or discussion that makes you wonder what is going on. And maybe then other things start coming up, like putting your keys in the freezer. Sometimes it continues to build and we don’t notice the changes until they become compounded.
A person living with dementia is exactly that, a person first and still living. It can be scary to face either yourself or a loved one.
The Emotional Impact on Families
Cognitive changes can be caused by many things, especially in an older adult. An infection, stroke, substance use, dementia or Alzheimer’s. It’s important to ensure any treatable causes have been ruled out and then look to maximize the person’s health through things like social connection, good nutrition and routines.
The effects reach further than the individual with the diagnosis but also to spouses and extended family. It is important to remember that the person experiencing cognitive changes isn’t dumb, their thinking patterns maybe changing and they still are able to be involved in conversations and decisions.
Some of the emotions faced by families are:
Grief and anticipatory loss — grieving the relationship as it once was, even while the person is still here, more on grief here
Fear and anxiety about the future, safety, and decline.
Guilt — for feeling frustrated, for not recognizing symptoms sooner, or for not being able to “do more.” Guilt for still enjoying their life while the other person is not able to.
Anger or frustration — especially when behaviour changes or communication becomes difficult
This video does a great job of explaining family changes: The Ripple Effect of Dementia: Beyond the Diagnosis #dementia #dementiasupport #dementiacare
Family Roles and Responsibilities Shift
This is one of the biggest changes families face.
Spouses
A partner often becomes the primary caregiver — balancing love with supervision, managing safety, and grieving the loss of shared roles, routines, and intimacy. It is also a loss of expectations and possible plans. It may also cause financial strain.
Adult Children
Adult children may step into decision‑making roles, daily care, or crisis management. This can be especially hard for those in the “sandwich generation.” Often children want to be helpful and respected but it can be hard for a parent to switch their role and allow a child to help.
Siblings
Siblings often renegotiate responsibilities — sometimes unevenly — which can lead to conflict or resentment. This may be due to one person living closer or having more flexibility in their schedule.
The Person Living With Dementia
They may grieve their own changing abilities, fear the future, or struggle with loss of independence.
Relationships Change
Marriage and Partnerships
Couples may experience:
loss of shared decision‑making
changes in communication
emotional distance or increased closeness
a shift from partner → caregiver
Spouses often describe the loneliness of living with someone who is physically present but psychologically changing — a form of anticipatory grief. It is important to honour these feelings as valid and normal.
Parent–Child Relationships
Adult children may feel the “role reversal” of caring for a parent who once cared for them. This can be very challenging, especially for a child that is in a helping career such as nursing. When a child wants to help and has the experience to provide direction, a parent may push back and want to make the decisions without the child. A parent may want to still be in the role of a parent and not have their child making decisions. Sometimes dementia can lead to personality changes, such as paranoia, irritability or unhygienic actions. This compounds the challenges as it could be the child’s actions, the underlying medical condition or both causing the parent to become upset.
It can be very challenging when a parent is showing unsafe behaviors, such as wandering, leaving the stove unattended or driving unsafely. Not only does it cause distress but an added task or worry when the child might be working and parenting. There can also be grief in the loss of a parental figure, their support and the relationship.
If a child had challenges with the parent while they were growing up, this time can bring up emotions that are deep and difficult. If you were estranged from a parent and now responsible for caring for that parent, it is normal to feel anger and resentment.
Family Conflict
Disagreements often arise around:
care decisions
finances
safety
division of labour
Some of the decisions that need to be made revolve around care decisions and the capacity of the adult to make decisions. In Alberta, it is suggested that a person have a personal directive, enduring power of attorney and a will. A personal directive (PD) covers all decisions of a non-financial nature. An enduring power of attorney (EPOA) covers financial decisions and actions. Both the PD and EPOA are for when a person is still alive but needing help making decisions. A will is direction for after a person passes.
A PD can be made quickly, easily and at no cost by completing the form found on the government website. Completing this can be such a gift to your family as it can prevent needing to go to the courts if you are unable to make a decision. Going through the courts can take many months and is an unnecessary stressor to a family already facing pressure. It is recommended that any adult over the age of 18 complete one. It can be changed by completing a new one. If you have any questions, reach out to the government website or a social worker!
https://www.alberta.ca/personal-directive
Another helpful document is Supported Decision-making. This document allows a person to be supported during decision making. For example, if a child wants to be able to call their parent’s doctor to get information, having this form will assist in the process. It does not allow anyone to make the decision for an individual but allows for getting information and discussing it with healthcare providers.The form can be accessed at:
https://formsmgmt.gov.ab.ca/Public/OPG5557.xdp
Of course, the best path to manage these documents, including an EPOA and will are to speak with a lawyer. Family meetings with a healthcare professional or therapist can be helpful.
A dementia diagnosis changes families — but it doesn’t mean they have to navigate it alone. With support, information, and shared understanding, families can adapt with more clarity, compassion, and connection.
If you’d like support as you navigate dementia‑related changes in your family, reach out for support.