The Experience of Grief and Spousal Caregiving

Catherine E. Nakonetchny, MSW, LSW

“Grief is in two parts. The first is loss. The second is the remaking of life.” – Anne Roiphe

According to Alzheimer’s Disease International, there are approximately 45 million people around the globe currently diagnosed with some type of dementia. This number is expected to double every 20 years, reaching an estimated 135 million individuals by 2050.¹ With the majority of caregivers being spouses, the future points to an increased demand for support and services for these important caregivers.

Many articles have been written about caregiver stress and interventions that can be provided to help relieve these issues; however, one very important topic not addressed in popular literature is grief. According to Linda Schupp, grief is defined as “an intense set of emotional reactions in response to a real, imagined, or anticipated loss”.²  A spouse’s grief can occur in association with many aspects of caregiving. The grief that spouses most identify can be categorized in three ways; loss of social and recreational activities, loss of control over life events, and loss of well-being both for the caregiver and their spouse.³

The loss of social connection often occurs as cognition deteriorates. Caregivers begin to isolate themselves as the demands of caregiving increase. At the same time, social networks begin to shrink, as family and friends withdraw in the face of the decline. As clinicians, we need to educate caregivers on the available resources in their areas that can help provide respite services. These may include in home care, adult day care options and even respite stays in nursing facilities. Spousal caregivers need to know that it is “OK” to take time for themselves during these stressful occasions as a way to recharge and reconnect with friends and family.

When a couple gets married they have visions of growing old together, enjoying their “golden years”. No one expects that they will have to care for their partner, some for upwards of 15 years. Spouses mourn for what was, what is, and certainly what could have been.  They mourn the loss of the person with whom they fell in love. As dementia progresses there is a loss of the marital relationship itself. Often the relationship becomes a paternal relationship with one spouse assuming the role of parent. This change in roles can be very frustrating and overwhelming for caregivers. Spousal caregivers need to be empowered to take as much control of their lives as possible and to enjoy small moments of satisfaction with their impaired spouse. They need to understand, that although there is no control over the disease process, they do have control over how they react to the disease.

In no way am I suggesting that this is easy, but by giving spousal caregivers effective tools, the feelings of powerlessness can be mitigated. Teaching caregivers how to use techniques, such as deep breathing, meditation, and aroma therapy, may assist in this process. Journaling is also a great way to help with the feelings associated with change in relationships. Encourage spouses to write down favorite memories, successes, and challenges from present and future plans, as well as desires that the couple has shared. This will give the caregiver an outlet for all of the anger and frustration that may be associated with these losses.

Grief may come from the loss of well-being not only for the spouse with dementia but also for the spousal caregiver.  In many cases the spousal caregiver is so busy caring for their partner, they often neglect to care for themselves. Caregivers are at high risk for anxiety, depression and often have underlying medical conditions that do not get treatment. Caregivers need to be educated on the stresses and burdens that occur during the caregiving process and need to be encouraged to seek support. Support groups are a fantastic way for caregivers to seek guidance and know that they are not alone in this journey. Medical professionals need to be aware of patients that have caregiving duties at home and make sure that there is follow up as needed for any medical conditions they may have. Those working with individuals with dementia and their spouses also need to encourage those caregivers to plan ahead for the future. Things such as advanced directives, guardianships and funeral arrangements need to be provided for. Contentment can be provided knowing these arrangements are made for the future.

As discussed, although prevalent in most caregiving situations, grief is a main factor in the experience of individuals providing care to a spouse with dementia. As clinicians we need to assure that the physical and emotional health of these caregivers is provided for. This means addressing the issue of grief throughout the caregiving journey and beyond.

About the Author

Catherine Nakonetschny earned her MSW from Temple University, and is licensed as a Social Worker in the state of New Jersey. She is a member of the National Association of Social Workers, and the Gerontological Association of America. Catherine is currently the Director of Social Services at the Evergreens, a continuing care retirement community in Moorestown, NJ and facilitates an Alzheimer’s Association Caregiver Support Group at the facility. She is certified by the Alzheimer’s Association in EssentiALZ Advanced Dementia Training, and has over 15 years of experience working in the field of geriatrics.

1. Alzheimer’s Disease International (December, 2013). Policy Brief for Heads of Government: The Global Impact of Dementia 2013-2050. London: ADI printing office.

2. Schupp, L. (2007). Grief: Normal, Complicated, Traumatic. Wisconsin: PESI, LLC.

3. Grady, D. (2012, May 5). When Illness Makes a Spouse a Stranger. The New York Times. Holley, C. & Mast, B. (2009). The impact of anticipatory grief on caregiver burden in dementia caregivers. The Gerontologist 49(3), 388-396.