As someone enters the moderate stages of Alzheimer’s disease/related dementia, a new set of situations begin to emerge as outlined in the July and August 2016 Beacon
newsletters. There is continued need to keep the person with dementia (PWD) engaged and connected but family caregivers recognize the increasing difficulty of doing so.
This dual challenge, in turn, adds to the growing list of responsibilities for the caregiver- who, more than ever, needs time to disengage from their role as caregiver. It is vital that caregivers stay socially connected and participate in activities that bring joy to themselves. This constant increase of demands placed on the caregiver during the moderate stage can become overwhelming and result in social isolation. The good news is, there are strategies that can help and supports that can be put into place to help both the PWD and their caregiver stay engaged and connected – both together and separately.
For the PWD, engaging with activities can improve both their mood and self-esteem. With any activity, the focus needs to be on the pleasure of the event rather than the outcome. For example, when playing an easy card game, who wins is less important than the fun of the game and connecting with others. Building on a person’s strengths and interests can help to identify familiar activities the PWD may enjoy and more readily engage in. Activities must be adapted, simplified, or shortened in the moderate stage. Participating in one activity for 30 to 60 minutes is usually long enough.
Adaptation can happen for nearly every activity when considered creatively. If the PWD has always been part of a bridge club and it starts to become a challenge, do not eliminate the activity altogether. Instead adapt it to their current abilities. If the size of the group has become upsetting or overwhelming,, invite a few of the members over to the house to play with a smaller group. If bridge has become too complicated, try a simpler card game. Instead of meeting the group beforehand for lunch, join up just for the game or just for lunch. Be sure to involve the person at their best time of day and provide a rest period after an activity to manage fatigue. If you are not present to observe how the PWD responds to an activity, ask for feedback from friends or others you trust to be honest with you. Remember that engaging the PWD in an activity rather than asking if they want to participate ensures more success.
Staying socially connected is also vital in the moderate stage. Be aware that crowds and groups of people can be more disturbing, so limit time spent at large gatherings. Try to
have one on one time to help the person with dementia not feel overwhelmed or withdraw. For example, if you go to lunch with family or friends, ask a member of the group to
engage your person in discussion. Conversations will need to be simplified and fewer questions asked that the PWD may not know how to answer. It may be more beneficial to share stories about your day or family events while remaining attentive and respectful. It will be helpful if you share techniques you have learned with family and friends to keep the PWD engaged in conversations.
The importance of the primary caregiver staying connected and engaged cannot be stressed enough. Often, caregivers lose these connections in such small increments that they don’t even perceive the change. Their vision shifts from ‘I’ prior to dementia, to ‘we’ in the early stages, to ‘they’ in the moderate stage. Recognizing this is the first step. However, by the moderate stage caregivers are so focused on their person, they do not feel their own self-care is a priority, or feel guilty taking even a little time for themselves.
A common analogy can be used to illustrate the importance of the caregiver taking personal time: You are seated on an airplane, and the flight attendant is going through the reflight instructions. “… And should the cabin lose pressure, oxygen masks will drop from the ceiling. If you are traveling with someone who needs assistance, put your mask on first.” This is an essential part of the instructions. If you do not get oxygen to yourself, you are no good to the person who needs your help. Personal time is oxygen. It is not selfish. It is not neglectful. It is when the caregiver can breathe. When they can reconnect with who they are beyond the role of caregiver. When they can rejuvenate themselves, and return to their person at their best.
Beyond making it a priority, caregivers report that time, or an inability to get away, as one of the main reasons they do not take time for themselves. However, there is a variety
of assistance from both informal and formal resources. Informal resources can include family, friends, and neighbors. Look into support that may be available with groups the person is currently involved in. For example, does the church have a volunteer program that would send a visitor?
Frequently, people in the social circle or family will offer to spend time with the PWD so the primary caregiver can get a break (e.g. respite). Many caregivers listen, but do not accept these offers. The concern of being a burden on others may prevent accepting offers of help. However, it is important to realize that people want to spend time with your person and/or you because they care. Think twice before declining a gift of time.
Friends and neighbors may still enjoy common interests or socializing with your person. Having a successful activity for all involved should be the goal. Caregivers will need to
consider what they should share about their person. For example, if long-time friends take a person with moderate dementia to lunch, they may need to assist with paying the bill and helping the PWD order from the menu. Sharing best-learned strategies can help ensure everyone is successful.
Another way informal supports can be invaluable is assistance with tasks, such as shopping or running errands, which can lessen some of the responsibilities of the primary
caregiver. Even though caregivers are not getting time for themselves, they are getting to check off the extensive ‘todo’ list. Additionally, even friends or family members that
live out of state can assist with finances online, managing insurance benefits or doing research into options.
Sometimes people do not know how best to help a family with dementia. Prepare a list of activities that others could help with. Think about what could be handed off to someone else, or even what someone else could do better. Hate weeding the yard, or shoveling snow? Put that on the list! Informal assistance allows the caregiver to have a break with the added advantage of not paying for services. Be specific as you outline your needs and then when someone asks how they can help, you can go to your list and ask which one they might help you with!
Formal resources for respite involve structured community resources, including non-medical in-home care or an adult day health center. These services are typically on a fee for
service basis unless there is long term care insurance or other benefits available. It is beneficial to begin services as early as possible so they are familiar and become part of the person’s routine. Think about how you are going to introduce the formal resource. Asking “Do you want to?” will probably elicit a negative response. Instead, try to rephrase
to positively engage, “We’re heading to a new social club I’m sure you’re going to love!” Remember decision making in the moderate stage of dementia is more difficult and change
in routines will take time to adapt to.
In-home care can be a friendly visitor, companion or attendant who can assist with hands on care. There are agencies that specialize in this type of service. It is most important to find the right match for the PWD as this will allow for more success. Be aware that this may not be the first person interviewed and it is best to be specific about your person’s likes, dislikes, and preferences. For example, the PWD may be very active and like to take walks or exercise. The paid caregiver would need to be someone that can engage in these types of physical activities. Having a list of activities to engage your person in is essential to reflect what they enjoy and will participate in. It is advisable that a paid caregiver have some dementia training so they know how to best interact with your person. It is helpful to be present for the first few visits to observe their caregiving skills and personality.
An adult day health center is an option that can benefit both the PWD and their caregiver. This is an ideal setting for the person to engage in socialization and structured activities
and the caregiver receives the added bonus of some respite time. Centers usually have a nurse on site and attendants who help the participants engage in activities that are modified to ensure successful participation. As there is a schedule of activities, choose days that have things your person would enjoy. Some centers have gender specific activities, such as wood working for the male participants while some will have outings to various community events. It is helpful to pick consistent days to attend as this aids in establishing a routine. Many adult day health centers even provide transportation to and from the location.
Sometimes families can be a bigger barrier to participation than the PWD. If you find yourself saying, “My person would never enjoy this” you may be that barrier. Allow your person to try this option as they may unexpectedly enjoy the setting or activity. Be aware that it may take several attempts for them to become used to a new addition to their routine. Remember that the approach taken when introducing a new activity or service can make all the difference. Some caregivers have reported that their PWD thinks they are going to work or assisting other participants at the adult day center which helps them to look forward to attending. Therefore, just because the first couple of days may be difficult, don’t quit. Get a report from the day program or in home care provider on what the person enjoyed as he/she will forget any fun that happened while you were away due to their own memory loss. However, this will assure you that they were fine and even had fun.
Staying engaged and involved in activities that bring joy is crucial for PWD and their caregivers. It is still possible for the PWD to find success and stay connected to you and others. By adapting activities, assessing your resources and involving informal and formal supports, you can ensure your person is able to stay involved. As importantly, you are able to have peace of mind and some much needed and much deserved respite time to care for self.