MCI is a Family Affair

If you are a close family member or friend of someone experiencing MCI you may be wondering what you can do to assist that person. You may also be looking for some guidance in managing how your life has been impacted by the changes you have noticed in your MCI relative.

Family members tell us they notice a number of changes in their relative with MCI, including:

• The need for extra support with managing some activities the person with MCI formerly handled on his or her own, such as doing the taxes, organizing vacation arrangements, or taking care of the logistics associated with home renovations. In a previous posting on this blog we discussed that by definition there is no marked decline in functional abilities in MCI; however there can be subtle changes, such as experiencing difficulties with managing activities that require complex planning.
• An increase in everyday memory slips.
• The presence of mild mood changes like increased irritability, low mood, and withdrawal from participating in former pastimes.

These changes can have a negative influence on your well-being that are similar in spirit, although not as severe, as the symptoms of caregiver burden experienced by family carers of a relative with dementia. Indeed, research shows that family members with an MCI relative report experiencing more symptoms associated with depression and anxiety as compared to same aged peers who do not have a close relative experiencing cognitive decline. In our clinical practice, these negative effects on family are commonly associated with the following types of concerns:

• Uncertainty about the MCI diagnosis and what this means for the future
• Wondering whether assisting is helping or making things worse
• Feeling worried or resentful about taking on new roles, such as managing the vacation bookings
• Feeling frustrated when their MCI relative makes a memory slip
• Experiencing a sense of loss for the way things used to be

In our behavioural intervention program for MCI, Learning the Ropes for Living with MCI™, we have adopted the following approaches to helping family members more positively manage the personal effects of having a relative with MCI. The core message behind the approaches is ‘You cannot control whether or not your relative has MCI, however you can control how you choose to deal with change’. The methods for positively managing change centre on choosing how to respond rather than ‘reacting’ to a situation you find personally challenging. If you had a bird’s eye view of the situation as it unfolds how would you like to see your best self respond? The simple approaches outlined below need to be practiced and utilized in conjunction with positive lifestyle choices, such as making time to do activities that are personally meaningful, enjoyable, and contribute to your overall sense of well-being.

• Take a deep breath. When faced with a challenging situation, pause and take a deep breath. This gives you a little bit of space to figure out what the next step should be. A calming action like a deep breath promotes your ability to regulate your emotional response and can often serve to stave off the body’s reaction to stress, such as increased heart rate.
• Consider your response. Consider your response before acting by reflecting on the outcome of possible choices you could make. For example, a brisk “I already told you” response to a repeated question often just escalates the situation and leaves both parties upset. Helpful options to consider might be simply answering the question or enabling the person to find the answer. For example, by directing them to consult the calendar if the question was about an event. Later make time to engage in a collaborative discussion about how to deal with the situation.
• Reflect on your expectations. Are your expectations of yourself and of your MCI relative realistic? Rather than focusing on how things used to be or how you think they should be, consider reframing the situation in a manner that is more helpful to you. For example, maybe it is time to let an accountant deal with filing the taxes if that was formerly the responsibility of your MCI relative and not a task you feel competent to assist with. In other situations a little support might be just what is needed to capitalize on your MCI relative’s expertise and sustain participation in an activity you both enjoy, such as pulling off a lovely dinner party.

Finally, the personal impacts of having a relative with MCI are not all necessarily negative. Positive effects are also noted by close family. For example, in our experience running programs for people living with MCI, close family members often report that learning about MCI has brought them closer to their MCI relative, helped them focus more on what is important in life, and enabled them to develop qualities (such as patience) and new skills. Finding out positive ways to cope with change due to MCI can be empowering and make living with MCI an experience that personally benefits rather than hinders your life.

Parts of this posting were previously published in Murphy, Troyer, & Climans (2014) Learning the Ropes for Living with MCI™: Participant Workbook. Toronto: Baycrest Centre for Geriatric Care.