Transforming the Dementia Journey

Dementia can cause strong emotional reactions in the care partner

“When we are unable to change a situation, we are challenged to change ourselves.” Viktor Frankl

When people are diagnosed with Alzheimer’s disease, or any other form of dementia, they and their care partners embark on a long journey of loss. We tend to focus on the losses experienced by the person with dementia – the deep forgetfulness, and the inability to cope with the activities of daily living. But care partners experience huge losses too – of companionship, conversation, support, security, and the comforting familiarity of the one they love who seems to be disappearing.

Dementia is a hard, hard journey. Researchers at UCL, London’s Global University, found that about 40% of family members caring for a person with dementia developed anxiety or depression, which often led to burnout, ill health, and a breakdown in care for that person.

They investigated people’s coping strategies and discovered, to their surprise, that care partners who coped best with the dementia journey were not necessarily the best problem-solvers. Rather, they were the people with the emotional capacity to accept the situation and find ways to manage it. The researchers also identified dysfunctional coping strategies, which included resistance, annoyance and avoidance, including substance abuse.

When you think about it, this finding makes sense. For the most part[1], dementia is not a condition that can be cured, so dementia itself is not a problem to be solved. Of course, there are numerous practical problems to be solved along the dementia journey, and a problem-solving attitude is very helpful. But the core competency in dementia support is emotional resilience.

Dementia demands of the care partner considerable acceptance, equanimity and emotional maturity. If we have not yet developed these qualities, but are willing to accept the invitation, caring for a loved one with dementia is the ultimate crash-course in emotional self-regulation!

So, how do we build emotional resilience for the dementia journey? What are the attitudes, practices and habits in your life that help you to feel centred, to release the burden of stress, and to overcome setbacks?

I am in the process of developing an on-line course that will focus on demystifying dementia, developing emotional resilience, and finding practical ways to connect with and honour a loved one who is living with dementia. If you would like to be kept informed, please send me an email and I’ll let you know when we’re ready to roll!

[1] Dr Dale Bredesen’s ReCODE protocol offers some hope, but requires strict adherence to a highly personalised therapeutic programme.