Living with memory loss
- For the person with memory loss
- Early stage programs
- Meeting of Minds memory enhancement program
- Crossing Bridges educational support group
When one is first diagnosed with a condition associated with memory loss, whether it be mild cognitive impairment (MCI), Alzheimer’s disease, vascular dementia, Lewy body dementia, or another related memory disorder, it may feel shocking. Even if one has noticed changes in one’s cognitive function and has suspected that something is wrong, receiving the initial diagnosis may seem, at least on an emotional level, like an emergency. Certainly, it is disorienting in that it requires a reframing of how one’s potential future is viewed. Such a diagnosis asks one and one’s family to reorient themselves to the world as they know it.
Coming to terms with a diagnosed memory disorder may be complicated because:
- The ways in which symptoms appear and the rate at which they progress is individual and variable, so it’s not always possible for medical specialists to tell individuals and families in a definitive way just what is happening now, what to expect next and what a long range timeline is.
- There are potentially treatable causes of memory loss which need to be evaluated and, if discovered, addressed before the clinical picture is as clear as it can be.
- Symptoms, especially in early stages of a memory disorder, are like desert sands in the wind. They fluctuate and may be affected by numerous factors, including sleep, nutrition and hydration, medication, emotional stress, travel or other change in routine, activity level, environmental stimulation, and the vagaries of the disease process itself, making it challenging for one to predict how he or she is going to feel or be able to function at a given time and place.
- Many people perceive a lingering social stigma attached to cognitive impairment, which makes it much riskier to disclose to others, including employers and even friends, that one is being evaluated or treated for a memory disorder.
- The timeline, although it IS variable, is nonetheless often long. Being told one has a progressing memory disorder and that one may live three to eight to twenty years after diagnosis, while needing to plan for the availability of progressively more help and care over time, may seem like an overwhelming endeavor, not only to the individual but to the entire family.
- The diagnosed individual or other family members may have already directly experienced living with someone who has had dementia - perhaps grandparents or parents or a spouse or sibling. This past experience, including what went right and what went wrong, impacts how the current diagnosis is received.
It is important for people diagnosed today with memory disorders and their families and friends to know that there are more treatments, services, supports, and clinical trials available for people with memory loss than ever before. People diagnosed with the early stages of memory disorders are empowering themselves and advocating for others as they bring thoughts and feelings about living with memory loss into the light of every day life. They are telling their doctors how to talk and partner with them. They are seeking out referrals to educational and support resources that can help them manage their lives. They are connecting with others affected by memory loss. They are identifying what they can do to live their lives as independently and hopefully as possible, while also tending to the practical preparations that accompany life.
While first learning that one has been diagnosed with a memory disorder may feel like an acute and isolating emergency, it is actually an increasingly common chronic condition for which there are many kinds of help available. The Alzheimer’s & Dementia Alliance of Wisconsin is here to offer such help! Call us at 608.232.3400, 888.308.6251, or send us an email.