One of the things that I enjoy is working with the National Health Foundation Trust (NHFT) Recovery College to co-create and co-present courses and workshops.
But that got me thinking...
What exactly is the relevance of the word "recovery" in the context of a diagnosis of dementia? So, after a lot of thought and a deep dive into my own experience of the processes, here are my thoughts.
Recovery
Recovery for people living with dementia takes on a unique and nuanced meaning compared to traditional medical definitions of recovery. Since dementia is a progressive condition without a cure, recovery is not about returning me to a prior state of health but is more about maintaining or improving my quality of life, preserving my dignity, and allowing me to find meaning and fulfilment despite the challenges posed by my illness. Here are some key aspects of what recovery might mean for people like me with dementia:
1. Person-Centered Care and Dignity
Focus on ME, not just my condition: Recovery means supporting our identity, preferences, and life history, ensuring we are treated with respect and dignity.
Maintaining my autonomy: Even as our cognitive abilities decline, preserving a sense of choice and control in our everyday decisions (e.g., our daily activities and personal care) contributes to our well-being.
2. Optimizing Functionality
Maximizing my abilities: Recovery involves helping us maintain and use our remaining abilities for as long as possible through cognitive exercises, physical activity, and social engagement.
Using our skills: Everyone living with dementia has a lifetime of skills and experience behind them. I may not be able to remember where I put my glasses, but I can still construct a complex SQL SELECT query on a database.
Adapting the environment to help us: Creating dementia-friendly environments that are safe, supportive, and enable independence fosters a sense of recovery.
3. Well-being and Emotional Support
Emotional resilience: Recovery focuses on emotional well-being by reducing anxiety, stress, and depression. This can be achieved through therapeutic interventions, social interaction, and creative outlets like art or music therapy. There is nothing more joyous and satisfying than the experience of achievement through creativity.
Supporting our relationships: Maintaining social connections and relationships with our family, friends, and caregivers plays a critical role in our emotional recovery.
4. Meaningful Engagement
A sense of purpose: Recovery for us people with dementia often means finding ways for us to stay engaged in meaningful activities, whether through hobbies, social involvement, or even daily routines that provide us with structure and a sense of accomplishment.
Validation: Focusing on activities and experiences that align with our past, interests, and capabilities provides us with comfort and reinforces our identity. Reminiscence exercises can play a big part in this, and we need MORE culturally appropriate activities of this nature.
5. Supportive Care Networks
Holistic care: Recovery involves comprehensive support from healthcare professionals, caregivers, and the community. This could include medical care, physical therapy, psychological support, and assistance with our day-to-day activities. A healthy lifestyle keeps us independent for longer - no one wants to feel like they're a burden!
Caregiver support: Caregivers need resources and respite to manage the demands of care, allowing them to better support people like me and foster a positive environment for our recovery.
6. Spiritual and Existential Aspects
Spiritual well-being: For some of us, recovery may involve spiritual care or engaging with the personal beliefs and values that provide us with comfort and meaning in the face of dementia.
Living in the present: People with dementia often live more in the moment as their memory fades, and recovery may mean helping us to find peace and contentment in the here and now.
7. Slowing Progression
Delaying symptoms: Recovery might mean using medications, therapies, and lifestyle changes to slow the progression of our symptoms and maintain higher levels of fitness and cognitive function for as long as possible.
In Summary:
For people like me who are living with dementia, recovery emphasizes improving quality of life, maintaining abilities and dignity, providing emotional and social support, and helping us feel valued and engaged. Recovery is not about reversing dementia but about maximizing well-being and fostering a sense of purpose throughout the journey of the condition.
Please let me know your thoughts.
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