HJNO Mar/Apr 2019

Healthcare Journal of new orleans I  MAR / APR 2019 45 Jeré Hales Chief Operating Officer Lambeth House Forthe last sixyears, her husband has cared for her, but just weeks ago, he kicked a public anthill, announcing on social me- dia that he has a girlfriend named Alex. He further revealed that Alex assists him in the care of his wife, and occupies a room (al- beit, part-time) in his marital home with B. Discussions and opinions concerning this unconventional situation ran the gamut. Many felt that he had betrayed the sanc- tity of marriage, stating, “He made a vow…in sickness and in health.”Others understood how loneliness and sadness could drive him to seek comfort outside themarriage but felt that he had crossed the line by bringing his mistress into B.’s home while she was still living. They could accept the infidelity but felt that he had dishonored his wife, that he should have remained discreet and kept the betrayal hidden. Finally, others, mostly fel- low long-term spousal caregivers, exercised compassionate understanding. As a health- care professional, I feel that it’s important to reserve all judgment on this and similar matters. I am just grateful that there was open discussion about the harsh realities of caregiving spouses of those with early onset dementia. Finally, we’re talking. According to theAlzheimer’sAssociation, 5.7 million Americans are living with Al- zheimer’s. Of those, approximately 200,000 are under the age of 65. Of the top 10 causes column  Senior Health of death in the United States, Alzheimer’s is the only one that cannot be prevented or cured. Dementia can be merciless, each stage of the disease causing slow and often cruel erosion of the person it afflicts. The effects can subsequently be devastating for the spouse of that person. In cases of early onset dementia, the years can begin to feel like centuries laced with depression, help- lessness, and loneliness. There are few studies that examine spou- sal caregivers of those with early onset de- mentia, but here is what is widely known: Diagnosis of dementia in those under the age of 65 can be complicated. Marital partners are often the first to notice behav- ioral or personality changes in their spouse. Changes such as aggression, withdrawal, or temporary confusion or forgetfulness in their partners are observed, but then often attributed to fatigue, stress, depression, or burn out. In such instances, seekingmedical treatment may be delayed. Once treatment is sought, the provider may not screen for dementia at the onset, so an accurate diag- nosis may be delayed or overlooked initially. Grief experienced by the spouse of some- one with younger onset dementia is often underestimated. Caregiving spouses are grieving the loss of their partner, their lover, and their married lifemuch earlier than they have prepared for. Additionally, intellectual Early Onset Dementia: What About the Spouses? or emotional exchanges gradually dissolve, leaving an unimaginable void and the sense that grief will be ever-present. Spouses of those with early onset demen- tia are often managing more than meets the eye. Outside of the premature transi- tion from marital partner to spousal care- giver, they could already be amember of the Sandwich Generation—those raising children while simultaneously caring for aging par- ents.The new spousal caregiver role coupled with the loss of support in their preexisting role can be overwhelming. Finally, the situationmight impose finan- cial issues that impact the marriage or the family. In addition to costs associated with managing the disease, there could also be loss of household income. Since early onset dementia can present as early as one’s 40s or 50s, diagnosis might occur in the middle of a person’s career. Or, a spousal caregiver might have to determine whether keeping a fulltime position is feasible. Either scenario could negatively impact finances. Despite reactions to the B. Smith story, the angst and experience of spouses of those with younger onset dementia is real. Now that the discussion is happening, the next step is to develop effective interdisciplin- ary approaches that support the growing number of couples dealing with dementia at such a young age. n Judgement flailed , and irritation swirled at controversy around B. Smith’s husband’s announcement of his girlfriend. B. Smith, a lifestyle icon, former supermodel and TV personality, was diagnosed with early onset Alzheimer’s Disease in 2013 at the age of 63.