By Alison Lynn, PMC associate director of social work
In my last article, I described how to go about the process of starting therapy: finding a therapist, figuring out how to pay, and getting prepared for a first session. Today’s focus is on how therapy can specifically help individuals living with Alzheimer’s disease and related dementias (ADRD) and their family caregivers.
What I Focus on with Caregivers:
- Disease education and symptom management advice: Understanding why a symptom or behavior is happening can build empathy, reduce caregiver stress, and facilitate creative problem-solving.
- Coping strategies, including strategies for self-regulation and stress reduction: This could include everything from mindfulness-based breathing exercises to finding opportunities for respite.
- Help identifying personal triggers: What feels stressful to one caregiver might not bother another. The difference lies in the past experiences they bring into this new role. For example, an adult child who had an unavailable mother growing up might be triggered by their (usually reliable) father’s new fluctuating symptoms.
- Learning how to set boundaries, and how to ask for help: Some caregivers need help asking for more from friends and family, whereas some caregivers need tools for separating from friends and family who are overly involved, or give unsolicited advice.
- General emotional support and validation: Caregivers need a safe space to explore thoughts and feelings they may not feel comfortable discussing with friends or family, such as anger, resentment, guilt and hatred.
- Processing grief and meaning-making: For many caregivers, ADRD is marked by a type of grief called “ambiguous loss.” Unlike the finality that comes with biological death and its related rituals, their loved one is still there in body, but not in spirit. This ambiguity is extremely distressing, and many need help navigating their emotions and coming up with a “why” behind the experience.
What I Focus on with Individuals living with ADRD:
The work looks very similar to what I’ve listed above, especially as it relates to processing grief, loss, and trauma. However there are some notable additions:
- Rebuilding self-esteem: Many of these clients have had their life re-framed around what they can’t do, rather than what they can. Therapy can help them rebuild their sense of self by focusing on strengths rather than deficits.
- Learning compensatory strategies: This could mean building skills to cope with functional loss (ie: keeping a calendar), or working out ways to adapt favorite activities that are no longer possible in their usual format (ie: substituting a recumbent bike for a ‘normal’ one).
- Establishing quality of life markers and making advanced care decisions: Many of my clients with ADRD feel left out of discussions about what their future may look like. We often work to identify specific quality of life markers, as well as to practice advocating for themselves while communicating these wishes to their care partner(s).
- Life review: Reminiscing about important memories and the contributions one has made throughout their life is an important aspect of late-in-life therapy. It can help individuals feel a sense of mastery and create meaning around impending illness and death. It is also a mood-booster as our clients with ADRD often have easier access to their long-term memories.
It is important to note here that therapy is a collaborative process. A therapist will guide an individual towards meeting their treatment goals, but it is up to that individual to do their own work as well. And, perhaps most importantly, they need to have the ability to be self-reflective.
Many of the individuals we work with can lack insight, or an understanding or appreciation of their own diagnosis. This is a symptom of dementia and is not something we can change. As frustrating as this is to some caregivers, the purpose of therapy is not to “convince” someone that they have Alzheimer’s disease, or to force them to open up. The person themselves must be motivated to come to therapy and cannot be forced into it.