Grief is the process of reacting to loss (thoughts, behaviors, emotions and physiological changes). People who are close to a person living with dementia often times experience grief and loss on the journey. This is because dementia is progressive (which means it will get worse over time). There will be lots of changes to adjust to and this can be extremely difficult. These feelings can be very strong, and can be even harder to cope with than the practical aspects of caring.
Grief often involves strong feelings of sadness or distress, especially when the loss is significant. It is very personal and can affect people in many different ways, including: shock, helplessness or despair, social withdrawal, anger or frustration, guilt, denial or not accepting the loss, longing for what has been lost and/or sadness. Some people may feel positive emotions at the same time, such as relief. How you feel may change, and you might find yourself more able to deal with feelings from one hour, day or week to the next. For many people grief comes in stages: shock, longing for what has been lost, anger, guilt, and acceptance or finding ways to live with the loss. You might find you go back and forth between some or all of these stages. This is very common and there is no normal length of time that grief will last. Grief is a natural response to loss.
When a person close to you develops dementia, you may both have strong feelings of loss. These feelings may develop or change as the person’s dementia progresses. Depending on your relationship with the person and your individual circumstances, you might feel that you are losing or have lost: the person, your relationship with the person, intimacy with the person, companionship, support, communication, shared activities and hobbies, freedom to work or take part in other activities, a particular lifestyle and a potential alteration in future plans.
You or the person with dementia may feel grief when thinking about how their dementia might develop. You may imagine the changes and losses it may cause, and how the person’s physical and mental abilities, relationships and future plans may be affected. This type of grief – thinking ahead to things that may happen in the future is known as anticipatory grief. You may experience this if the person’s dementia is causing them problems with communicating, reasoning and understanding, and being able to discuss what may happen in the future. For some care takers, anticipatory grief can be even harder to deal with than the grief they feel after the person has died. For some people, anticipatory grief may lead to depression. It can help to talk about these feelings while you are still caring for the person with dementia. It isn’t possible to know exactly how dementia is going to affect someone. Looking into what may happen in the future is not always useful and can cause unnecessary distress. While it can be helpful to think ahead and make plans, try to also focus on the time that you have with the person here and now. If the person is feeling a sense of loss about what they may not be able to do in the future.
Ambiguous loss is a person’s profound sense of loss and sadness that is not associated with a death of a loved one. It can be a loss of emotional connection when a person’s physical presence remains, or when that emotional connection remains but a physical connection is lost. Often there isn’t a sense of closure. In respect to a dementia diagnosis, the person with dementia may be physically present, but at times psychologically absent.
Caring for a person with dementia can have a huge emotional impact, and feelings like these can be very difficult to cope with. It can be even harder if there are people around you who don’t fully understand or accept the impact the person’s dementia is having on you.
The Daily Work of Grief: Reflections and Healing presentation on April 26 from 10:00 – 11:30 a.m. (CT) will be a healing discussion with real-world examples and reflection activities around navigating the complex feelings of anticipatory grief and ambiguous loss. Access the Daily Work of Grief Flyer.
Participants will dispel commonly held misconceptions of grieving and learn practical coping strategies to deal with significant non-death loss throughout the lifespan. Learners will understand symptom overlap of grief, bereavement and depression; learn common themes of loss with older adults and family caregivers, identify coping strategies for significant non-death losses and learn to utilize practical self-care strategies for significant non-death losses. 
The Alzheimer’s Association is privileged to have North Dakota native and past Clinical Services Manager for the Alzheimer’s Association Minnesota/North Dakota, Alyssa Aguirre, LCSW-S, Assistant Director of Dementia Care Transformation, Department of Neurology, Dell Medical School, University of Texas – Austin to share her expertise on this very important topic of grief.
Alyssa’s life and work experience as a care consultant, clinical services manager, work in palliative care, manager at Comprehensive Memory Center, owner of Counseling and Aging and so much more gives her excellent experience and insight to speak on a subject she is passionate about. Alzheimer’s Association MN-ND Community Educator and Social Work Intern Mary Heil will provide an interactive and reflective mindfulness exercise.
This program is intended for all care partners. This is also appropriate for professionals and is approved by the ND Board of Social Work Examiners – 1 CEU. Join this free virtual program by registering at bit.ly/DailyGrief2024.
