While dementia experts now define seven distinct stages of the illness, it’s more helpful to think about the illness in terms of four major stages: emerging, early, middle, and late. Most Connected Horse participants have been diagnosed in the previous two years and will fall in the emerging, early stages.
Knowing which abilities may be lost can help you understand and respond to some of the behaviors and difficulties of a Connected Horse workshop participant with dementia. These include:
Short-term Memory
People who struggle with recalling recent memories and newer information may repeat themselves and/or ask the same question over and over. To help them retain their dignity, each time this repetition occurs, you should react as though you are hearing the information for the very first time. It’s important NOT to say things like, “I just told you that” or “don’t you remember, we just talked about that!” Never remind them that they are forgetting and avoid “quizzing” them by asking questions such as “do you remember my name??”
In the Connected Horse setting, you may encounter people who have affect or behaviors that may not be familiar to you. Short-term memory loss is one of the most common losses in our program. We have participants who re-tell the same story multiple times about their experience with horses. We do not stop them. We listen and respond with a positive statement. In addition, we are careful not to express judgment to the person or care partner who may try to stop the person from talking. One suggestion is to try to say something like, “You told us about your experience with horses. Can I ask you a question about brushing the horse? You looked like you were very focused on getting the tangles out of his mane. Is that true?” Providing cues and emotional memory responses can often help a person with dementia connect to the present.
Ability to Tell Time; Recognize People, Place, Themselves
People living with dementia are not always oriented to time and place. They may get up at 3 am to “go to work” or not recognize themselves in a mirror because they believe they are in their 30s. Always validate perceptions such as these. They are in their reality at the time, and it WILL cause stress and anxiety if you attempt to correct them.
In the Connected Horse setting you will work with people in the earlier stages of dementia, so they see themselves connected to more or less the present time. However, it is common for people to ask what’s next, why are we here, and are we coming back. Keep the responses simple. During the workshops, it is important to give the agenda for the day and then repeat what is going to happen before and after each activity. It may feel repetitive, but it helps all participants relax and feel comfortable that the facilitators are holding the schedule.
Language, Math, and Understanding
Language as well as math skills decline over time as the disease progresses. “Word finding” difficulties come first. People will struggle with the name of objects, yet still recall what the objects are used for. Eventually, they will also become confused about what the objects are for. Early on, a person may say, “Pass me the milk pourer” because they have forgotten the word pitcher. Further along in the disease, they may also forget the function of the pitcher and try to drink directly from it.
In the Connected Horse setting, you may encounter people who need more time to process what you have asked, and need more time to respond because they are searching for the right words. Try to ask failure-free questions. Avoid right or wrong answers. Give participants time to respond. You don’t need to fill in the lost word unless they look frustrated. We have found that participant’s verbal fluency improves if we slow down and let them speak.
Concentration
A person with dementia is easily distracted. This can be a plus or a minus, depending on what you are trying to accomplish. If someone is getting upset or trying to leave, it can be helpful to distract them by getting them to reminisce about a favorite pastime or person. If, on the other hand, you are trying to get them to groom the horse and they keep getting distracted by the birds in the trees, it can be a minus.
In the Connected Horse setting, you may encounter people who appear bored or wander away from an activity. For participants who can’t concentrate for the duration, you may have to adjust the activity to include shorter, more focused activities that change often. Sometimes combining physical activity and conversation can help release the energy and allow people to focus for longer periods of time. It is okay to break the groups into those who desire a slow pace and more observational activities and a group that desires short activities without a lot of detail.
Performance of Familiar Tasks
It’s been said that persons with dementia seem to “lose their starter button.” While it’s true that they may have difficulty beginning tasks, this doesn’t mean that they can’t do them. Prompting and cueing a person in order to get them started is the most effective way to help them keep their skills and feel a sense of worth and dignity.
In the Connected Horse setting, you may encounter people who don’t engage in an activity. Oftentimes if you provide some verbal cueing or encouragement the participant will begin to understand the request. Make simple requests like, “Tom, walk with me over to the barn. I want to introduce you to Pepe the horse.” Keep your request to 2 or 3 steps.
During the program, you will see that we encourage all participants to have an individual experience. Sometimes it is helpful for the facilitator to step in and provide the cues so the care partner can release that role.
Controlling Emotions, Mood and/or Impulses
Because the part of the brain that helps with reason, impulse control and emotions is no longer functioning normally, a person with dementia may have difficulty containing or controlling emotions. They may do whatever they are thinking at the moment.
In the Connected Horse setting, you may encounter people who have strong emotions as they adapt to environmental responses and release energy from their body. Facilitators should be aware of changes and make modifications to help all participants stay comfortable in their environment. If a participant is becoming agitated it is best to walk away from the current situation and allow the person to reset.
Judgment
Judgment can be impaired around general safety awareness, and become more impaired as the disease and its physical and cognitive limitations progress. People living with advancing dementia may not be able to determine if they have the capacity to make it across the street when a car is coming down the road or other activities that require the ability to connect self-capabilities and the reality of a situation.
In the Connected Horse setting, you may encounter people who have mild impairment with judgment. It is important to repeat the safety requirements and be aware of participant’s abilities to make safe decisions. For example, a person who has impaired judgment may not pull away his hand when a horse starts to nibble, which could lead to getting bit. A participant leading a horse that is walking too fast may try to move faster when it is safer to stop and start with more control. The facilitator should try to react to these situations before the situation becomes unsafe. Use phrases like “can we try moving your hand over here to see if the horse stops nibbling?”, or “try to see if you can stop the horse and walk slower, to see if the horse will follow your lead.” Of course, if the situation is unsafe, you should stop the horse or participant from being harmed.
Interpreting Sensory Information, such as Vision and Hearing
People who are living with dementia often have changes to their senses–their hearing, touch, smell, sight and taste. In the early stages, they may not tell you about changes or you can misinterpret a change. Oftentimes there are modifications a person can make to improve the sensory experience. For example, eyesight can be affected so that a person doesn’t see one side of a plate of food. It may look like the person isn’t hungry, but it could be that he doesn’t see there is more food on the plate.
In the Connected Horse setting, you may encounter people who have impaired senses. Be especially careful to watch for visual challenges. A facilitator can observe where a participant is looking when talking about approaching or observing a horse. If she is looking in the wrong direction, ask the participant to walk with you to a better place to observe the horses and help position her close enough and in the right direction. Watch for glare and shadows which make it harder to focus on the object of interest. There is no hard and fast rule about distance, lighting, etc. You need to observe responses. This can also be true for group discussions as well. When there is a lot of background noise or multiple people are talking, it can be hard for someone living with dementia to hear, focus and engage in the conversation. Our recommendation is to encourage one person to talk at a time. Speak crisply and clearly, and reduce multiple requests for a participant to respond.
Although dementia is a disease of many losses, certain abilities remain intact that you can tap into as you facilitate the Connected Horse program:
We see people engage and interact in ways that often surprise their care partners. Participants will connect with a horse and stay focused on grooming or cleaning hooves for 5 or more minutes before commenting, “Wow, it feels good to help this animal.” We have also observed participants who have been almost silent during the first workshop verbalize in a group about how beautiful it is to be with the horse and “feel good, feel a part of something so special.” We often ask participants who are less verbal if we can share what we observed. We share experiences like when we watched a participant walk slowly up to a corral and then lean into the horse. His shoulders relaxed, a smile emerged and the horse dropped his head. After we shared our observations, the participant responded with a smile and sigh, “yeah, that was so great. It reminded me of when I was a boy with a horse at camp.”