A recent report by the Mental Health Foundation (UK) is calling for dementia to be treated as a disability. They said, correctly, that dementia is seen as a disease like many others in that it should be curable. Tragically, only when dementia is caused by medications, infections or some rare, operable situation is it curable. Instead it is a relentlessly progressive, destructive disease with which the affected must live until they eventually die.
The Foundation says that it is also crucial that people with dementia have their rights respected and upheld. This requires far more attention being paid to the impairments caused by dementia and how much impact these impairments have on the person’s everyday life, including the way society treats them.
Most people will attest to the stigma that is attached to someone with dementia. Most people will attest to their fear of going public with their dementia diagnosis. People with dementia have enough to adjust to without societal bias, but the bias remains.
For those with younger onset Alzheimer’s disease (YOAD), the fact that brain disease would develop in someone who is not “old” makes the adjustment even harder. Many, in their 40s and 50s, are still raising children and are at the peaks of their careers. Younger onset Alzheimer’s, as well as other dementias that can strike people still in their prime, can be even more devastating than the traditionally developed dementia that presents symptoms in one’s older years. Considering that dementia at any age is devastating, it’s hard to place values on what is harder. However, the younger the person, the more years of normal life have been lost.
Dementia destroys the brain. In situations where it is developed in mid-working years, dementia not only destroys the quality of life and financial stability of a family, it makes it necessary for people to quit their work. Sometimes slowly, sometimes quickly but it inevitably will make work impossible. This, coupled with the inability, as time goes on, to make sense of words, perceive reality, remember instructions or new material and eventually, even the faces of loved ones, makes it seem impossible that the disease is not already considered a disability.
People with dementia should be supported in a way that allows them to accomplish what they can. The same holds true for people with any other disability that cannot be cured. Until the time comes when dementia can be cured, people with any of the types of dementia that fall under this umbrella term, including Alzheimer’s, Lewy body, vascular and many others, should be given any of the protections others with disabilities receive. This includes disability payments for those who are working when the disease strikes.
Elevating people with dementia to a place in society who have a voice that is heard in all global governments is vital. There are many here in the US who have spoken before congress and who continue to be involved in national and global efforts to raise money for people with Alzheimer’s, and for research to prevent or cure it. These same people, and many others who remain behind the scenes, argue that money raised should be used for care as well as cure.
Funding is vital to economic and humanitarian world health. If having dementia legally declared a disability will help those with the disease receive the attention and the services that they deserve, then one can only hope this step will be taken. Anything that can ease the journey of people with dementia and their families is a social obligation for the fortunate among us who are not currently living with the disease.
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Carol Bradley Bursack is a veteran family caregiver who spent more than two decades caring for a total of seven elders. She is a newspaper columnist and the author of Minding Our Elders: Caregivers Share Their Personal Stories. Bradley Bursack is also a contributor to several books on caregiving and dementia, and is passionate about preserving the dignity of elders. Her website is www.mindingourelders.com. Follow Carol on Twitter @mindingourelder and on Facebook at Minding Our Elders.