Well-being is at greater risk for care partners in dementia care primarily because it requires recognizing, identifying and responding to what can be an extremely insidious shift in roles, relationships and responsibilities. Emerging care partners are learning to respond to an illness that cannot be seen while being simultaneously assaulted by the stigma that often comes with a diagnosis of memory loss. Unlike other age-related illness, Alzheimer’s and other related dementias can result in enormous shifts in personal identity, in addition to how a couple and a family function privately and socially. Consider the following suggestions for cultivating well-being while care partnering:
ONE: Use the word care partner more; see how this impacts perception. Adults living with memory loss will thank you for it. You may thank you for it. Continue reading →
“A partner paradigm strengthens our interconnectedness and can bring more awareness to the kindness and support that is right under our nose.”
When do you realize you are a family caregiver? Responses in my experience range from the darkly humorous to the completely visceral, such as: “When my husband started calling me ‘mom.’” Emerging caregivers are often not new to caregiving at all, but rather isolated from the pack. This delays significant steps toward caregiver support and activities that contribute to well-being and caregiver identity, such as joining groups for information, support, stress reduction or counseling. There may also be significant resistance to the word “caregiver” and associated activities. It can feel one-sided and lonely; a loaded word fraught with fear, judgment from friends and comparisons to other family members who may have carried this title in the past.
Emerging as a caregiver can be an uncomfortable and vulnerable time, a trust free-fall. A sense of loss and disappointment is completely natural. Continue reading →
Sami Barmada, M.D., Ph.D., is a scientist, lecturer, and clinician in the University of Michigan Cognitive Disorders Program. He was recently in the news for the discoveries that he made in the laboratory with his colleagues in California and the United Kingdom. Their research findings focused on a protein, TDP43, which accumulates in the brains of individuals with ALS and dementia. We had a chance to sit down with Dr. Barmada to understand more about the connection between ALS, dementia and other related diseases.
You are a clinician in the U-M Cognitive Disorders Program but your research focuses on ALS. Are cognitive disorders related to ALS?
The short answer is yes. Years ago, we believed that ALS was a disorder that only affected movement, Continue reading →
Life is a journey. The Detour Ahead road sign acknowledges that dementia or memory loss significantly alters a person’s journey through life. Other road sign tips for living with memory loss will be introduced over the next few months.
Just as detours are not a normal, expected part of your daily commute or family road trip, dementia is not a normal part of aging. As you age, a few changes can be expected such as:
Increase in forgetfulness. The older we are, the more we have learned and have to remember. It is normal to become more forgetful after age 50.
“Patience may seem like a superficial virtue, but actually it embodies a deep insight into the nature of things: they’re intertwining, messy, imperfectible, and usually not about you.” – Rick Hanson, Ph.D., neuropsychologist and author
Patience, is the quality caregivers and partners share most frequently when asked what they need and feel to be well and balanced in their caregiving role. Reliable and abundant patience is what they desire most in their relationships and in their daily lives. They express deep concern, and even shame, regarding their transient feelings of patience, especially towards the person they are caring for. The direct experience of “lost” patience combined with subsequent self-criticism and feelings of guilt can become a hamster wheel many care partners find themselves circling for years on end. This is a dangerous cycle that not only erodes the bedrock of caregiving confidence, but the health, well-being and safety of all involved.
Currently, there are over 5 million Americans living with Alzheimer’s disease. To prevent or delay the onset of the disease, we need to do research and discover new treatments.
We’ve all been asked to lend a hand with something or donate a little time for a good cause. It is quite eye opening how we benefit from volunteers who have helped improved our lives and enriched our culture – including medical discoveries that we rely on every day.
Research volunteers, who generously give up their personal time to become part of an Alzheimer’s research study, play a crucial role in the discovery of improved treatment options and cures for this disease. These do not just get discovered by scientists working in a lab, but also because people and families who are Continue reading →
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