Alzheimer’s disease is a health crisis that the entire family goes through - not, just the person diagnosed with it. It has a life-changing impact on everyone involved, especially those who have designated themselves as family caregivers. It’s the same reason other family members also need emotional support by working with a therapist to learn effective coping strategies.
As each member copes with life’s adversities differently, let’s find out the impact of dementia on family and carers.
On Family Caregivers
At the early stage of Alzheimer’s, primary caregivers are often the adult child with their elderly mom or dad living with them or close by. Here are ways Alzheimer’s challenges them.
Most adult children are career individuals with 9-5 job responsibilities to their employers. At the same time, many are raising their own family. A typical scenario is that one of the children takes on the role of a primary caregiver for an elderly parent right after diagnosis. So they can take care of a loved one, the family caregiver moves into their parent’s home or the other way around.
Instances of occasional memory loss, misplaced things, and repeated questions can be stressful to deal with. Add the emotional and mental load of an uncertain future, and this blows into caregiver stress.
Feelings of guilt
Adult children deal with undeserved guilt while caring. As most of those who turned into family caregivers don’t have professional care experience, many are guilty of not being good enough or able to provide better care.
If this situation resonates with you, overcoming guilt starts with recognizing that there’s a limit to how much you can do, and you should respect that. Don’t be too hard on yourself.
Increased risk for mental and physical health diseases
Millions of family caregivers provide billions of unpaid care hours to loved ones at home. The increasing tasks, accumulated stress, and sleeping troubles eventually manifest as mental and physical diseases, such as anxiety, depression, and burnout.
According to Caregiver.org, roughly 20% of family caregivers get diagnosed with depression, and 38% experience extreme stress due to the situation.
Self-care is as crucial as providing care for others. Getting enough shuteye and frequent respite ensures that you, as a family caregiver, stay healthy and able to keep up with all the day-to-day responsibilities.
Social isolation and loneliness
Another direct effect of caregiving on a family relative with dementia is decreased social activities. Instead of enjoying a great dinner with colleagues on a Friday night, family caregivers go home to prepare dinner for a loved one and ensure they take their medications on time. Changing social priorities often leads to isolation and loneliness.
There are various resources to receive support and encouragement from others in the same situation. As a family caregiver, you can prevent isolation and loneliness if, instead of cutting off your social networks, changing the people surrounding you into those you can relate with allows you to receive support. Social groups, such as the Caregiver Action Network (CAN) and The Alzheimer's Foundation of America, provide a platform to connect and share information with others.
On Young Children
Many family caregivers are members of the ‘sandwich generation’ who undertake multiple responsibilities of raising children, earning for the family, and becoming a caregiver to a loved one.
Confusion and emotional stress
Grandchildren or young members of the family who have a bare idea of what’s happening around them may feel confused and scared of the change occurring due to dementia. When they see a loved one become aggressive, agitated, or show inappropriate behaviors, they may suffer emotional stress.
Family caregivers should explain to the children that it’s the disease that causes uncontrollable behavioral changes in their elderly loved one. It’s advantageous if children understand what a loved one is experiencing so they can get involved and be a significant source of emotional support during difficult times.
On Other Family Members
Alzheimer’s also affects non-family caregivers. Although other family members don’t directly provide care, they fulfill a role in planning for the future and ensuring that their elderly parent gets through the disease as comfortably as possible.
Growing anxiety over an uncertain future
An uncertain tomorrow is a concern the entire family should discuss. The increasing anxiety about what to do next and what will happen in the coming years can be minimized if everyone participates in planning for the future with the help of a financial or legal advisor.
Planning for end-of-life, long-term care finance, and creating advance directives, like making a will, is best done after diagnosis when a loved one can still make decisions for themselves.
Shift in priorities
Other family members may volunteer to help lessen the strain on the primary caregiver, so priorities will change. They may devote their weekends or after-work hours to looking after their elderly parent instead of socializing with friends.
Increasing financial difficulties
Dementia requires long-term care spanning several months to years of memory care support, which can be expensive. Unless your elderly loved one has health insurance or personal assets that can help cushion the financial strain—some family members may spend out of pocket to sustain care for long-term needs.
Disagreements over care decisions
One benefit of planning and making advance directives is that it prevents disagreements between family members and ensures that your loved one’s wishes are met. With directives, they can make independent decisions and consider what they want instead of what others suggest they do.
Arguments are inevitable if there’s no plan and no person is appointed to make decisions, like which memory community to move to and how to finance care. Everyone has conflicting opinions, so it can be another stressful problem for the family.
Looking at the Bright Side of the Challenges of Alzheimer’s
The end of Alzheimer’s is heartbreaking and sad, but on the other end, the long journey through the disease can have a lasting, positive impact on the patient and their families. Since everyone knows what the end is like, they’ll make an extra effort to value and enjoy every moment with their elderly family member—whether that’s making meaningful visits, being more attentive to their loved one’s needs, or showing more compassion.
The hard times can bring everybody together and leave everyone with new life perspectives. For a loved one living with Alzheimer’s, seeing everyone cooperates in taking care of their needs can make them feel loved.
Learn more useful tips to overcome caregiving stress by reading our article How To Avoid Caregiver Stress And Burnout.
Syed has years of experience dealing with people, understanding their needs, and helping them find solutions to their problems.
As a Certified Senior Advisor (CSA), Certified Dementia Practitioner (CDP), Certified Montessori Dementia Care Professional (CMDCP), Syed is committed to working closely with Senior and their family knowing what is it like for individuals facing a challenging time, at times groping in dark trying to figure what is the appropriate next step or care level for their unique situation.
Syed and Senex Memory Advisors are fully committed to working closely with families in creating a personalized, step-by-step process memory care plan at zero cost.