A person living with dementia is more than the diagnosis—which is why we always use the phrase “person living with dementia” in our program. Likewise, we use the term care partner rather than caregiver to emphasize that providing care is part of a relationship, and should be done in partnership with the person asking for care.
The Connected Horse supports the concept that a dementia diagnosis impacts the whole family. This module looks at the impact of dementia on care partners. In this module, we tend to focus on the negative aspects and stresses of caring. However, it is important to point out that while there are significant losses and stresses, there are also moments of joy, hope and new experiences. The Connected Horse workshops hope to activate participants to work towards more of those positive experiences and an engaged relationship. Understanding a little about family systems theory will help the facilitator better understand how we divide groups, mix up groups with care partners and people living with dementia and how we pair dyads with others.
According to the Alzheimer’s Association, nearly 16 million family members and friends provide close to 18 billion hours of unpaid care each year for people living with dementia.
The care partners who participate in Connected Horse Workshops are part of an enormous army of people who provide unpaid care to an adult or child in the United States. According to Family Caregiver Alliance statistics, approximately 43.5 million care partners spend an average of 22 hours a week on care.
Care partners often view their role as simply doing what anyone would do for a loved one. They often willingly and compassionately add this new role to the relationship. They don’t always acknowledge the full physical, emotional, psychological and financial support they are providing. Research suggests that the two-thirds of care partners who are women may experience higher levels of burden, depression and impaired health, possibly related to the amount of time women spend actually conducting caregiving tasks. This is why the research results indicating that the Connected Horse workshops reduce feelings of depression and anxiety in care partners are so significant.
The strain of caregiving can take its toll on care partners. Especially for care partners to people who were recently diagnosed with dementia, the new role can be overwhelming and frightening. Handling everyday tasks and responsibilities can also reverse roles in a relationship.
Especially right after the diagnosis, the care partner may immediately assume more tasks, and treat the person living with dementia differently. The care partner wants to protect the person they love, while the person living with dementia still wants to be independent and purposeful and helpful every day. Even though the person living with dementia can do many things on their own, the care partner’s tendency is to hover and protect them after the diagnosis.
You may observe this dynamic during the Connected Horse workshops. Understanding what is happening and encouraging individual experiences will help the care partners have their own experience in the Connected Horse workshops, rather than focusing entirely on the person living with dementia.
Many studies show that some people can thrive when caring for others. The role of caregiving may help to strengthen connections to a loved one, and lead to a sense of joy and fulfillment and being appreciated in looking after others.
However, some people can find this new role overwhelming. They have no training or special skills. They feel they have to take on the complex demands without asking for help. Care partners may begin to ignore their own needs in this role, and can report a variety of health problems from ignoring their own needs in lieu of another.
Taking care of a loved one can be physically and emotionally demanding, and create high levels of stress. Decades of National Institutes of Health-funded research show that supportive educational programs for care partners can improve their own quality of life and reduce depression. Care partners need to know it is important to care of themselves.
Caring for someone living with dementia can have many rewards. For most care partners, being there when a loved one needs you is a core value. However, it can be time-consuming, and can bring with it feelings of frustration, exhaustion, loneliness and sadness. Care partner stress—both emotional and physical—is very real and very common. The emotional and physical demands involved with caregiving can strain even the most resilient person.
Care partners may find themselves taking on a new role in the relationship as their partner’s memory declines. The person living with dementia may no longer be able to perform certain tasks, such as balancing the checkbook, doing the taxes, handling financial and legal matters and doing certain household chores. Making important decisions on their own may feel overwhelming, but others may need to encourage them to turn to family, friends, professionals or community resources for assistance, as needed.
Some signs that care partners are experiencing unmanageable stress include:
For care partners, the horses in the Connected Horse program can be great equalizers. They don’t have to carry the role of care partner. The horses react to participants and can help each participant see how their stress and energy impacts themselves, the horses and others. The horses don’t acknowledge the role of care partner or person living with a dementia diagnosis.
We have seen dyads become more aware that each one of them is capable, can learn and most importantly can connect. The horses, care partners and the persons living with dementia often become a triad. Being with nonjudgmental horses in the moment can allow care partners to ease resentment and restore a sense of joy and wholeness. Being centered, in the moment, may increase a care partner’s willingness to accept help from others.