DEMENTIA : Walking the Talk with Family by Robin Shepherd
It ’ s January , 2024 . A hypothetical family that we ’ ll call the
Smith ’ s is busy making New Year ’ s resolutions . Grandpa Smith vows to eat healthier , grandma will exercise more , mom will work smarter , dad will clean the garage , and the kids will stop binge-watching TV .
The Smiths are prioritizing quality of life this year , but they can do more with a longer-term view that takes into account life changes and serious health issues that their family might encounter . They can take steps this year that will help them prioritize quality of life in the years ahead .
Dementia : a case in point
Every four seconds , someone is diagnosed with dementia .
The number of Americans living with dementia is expected to nearly triple , affecting 15 million by 2050 . It ’ s a public health problem that is impacting our quality of life , and we ’ re not prepared for it .
Dementia is a condition characterized by progressive decline in brain function that can affect thinking , memory , behavior , movement and autonomic systems severely enough to impair daily life . Over time , dementia limits a person ’ s ability to function independently . Caring for a loved one with dementia can be more challenging physically , emotionally and financially when compared with other health conditions common in later years of life .
In our example , Grandpa and Grandma Smith are over 65 years of age . Based on population health data , their risk of having dementia will double every five to ten years . Grandpa is beginning to experience problems managing family finances and home repairs . He ’ s not sleeping well , there ’ s a tremor in one of his hands , and he suffers from bouts of confusion and agitation . Grandma is taking on more household responsibilities and she ’ s exhausted . At her urging , Grandpa makes an appointment with his doctor but doesn ’ t share his health concerns with anyone else . As he sees it , there ’ s nothing he can say to his family until he has answers about what is happening to him .
Have the Talk
It ’ s human nature to avoid conversations about serious health issues that may one day impact the family . Few issues trigger more avoidance than dementia . There is no cure yet for the most common diseases that cause dementia , including : Alzheimer ’ s , Lewy body , and vascular diseases ; Frontotemporal Degeneration ; and mixed dementia .
Conversations open the door for families to learn , plan , and take action together to address the possibility of dementia in the future . Among the most important goals of family conversations about dementia is advance care planning .
According to the Centers for Disease Control and Prevention , 70 percent of Americans have no advance care plan , living will , or other advance directive . Many people are unaware of the importance of these documents in ensuring that their wishes for medical care are followed if they become seriously ill , such as
62 with dementia . It ’ s also important to know that Medicare ( Part B ) covers voluntary advance care planning as part of an annual wellness visit ; and if it ’ s part of medical treatment , the Part B deductible and coinsurance apply .
Walk the Talk
After a series of tests , Grandpa Smith is diagnosed with Lewy body dementia , a neurodegenerative disease . The doctor advises him to get his affairs in order and schedules a six-month follow up . Grandpa and Grandma are actually relieved to have a diagnosis that explains his symptoms , but worried about what to expect with disease progression . They invite the family to visit . It ’ s time to be open about Grandpa ’ s diagnosis and talk about next steps , but they don ’ t know where to begin .
A case worker recommends several options to get the conversation and advance care planning started : Five Wishes ( Aging with Dignity ), The Conversation Project ( Institute for Healthcare Improvement ), and Prepare to Care ( AARP ).
The family ’ s discussion brings them closer together , and with time , inspires action . Grandma will join a caregiver support group that offers caregiver skills training and respite support . The Smiths ’ adult daughter plans to volunteer at a nonprofit organization that conducts dementia education workshops and advocates with policymakers for more equitable coverage of dementia care . The Smiths ’ adult son and fellow musicians perform benefit concerts , raising scholarship funds for students of geriatric medicine .
Grandpa is invited by his university alma mater to join a clinical research study focused on palliative care benefits for people with Lewy body dementia . Palliative care has helped him manage his symptoms and access chaplain services to bring spirituality into his journey with dementia . He also plans to donate his brain to dementia research . He makes the most of each day , grateful to have a special purpose .
The Smith family is a composite of people we ’ ve met in our work . More than 1.5 million people are living with Lewy body dementia , supported by their caregivers on a difficult journey . Learn more at www . berghoff-foundation . org .
Robin Shepherd is Executive Director of the Susan and Charles Berghoff Foundation , a registered 501c3 nonprofit organization based in Morgan Hill .
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