Dementia is a syndrome, and is the gradual deterioration of functioning, such as thinking, concentration, memory, and judgment, which affects a person’s ability to perform normal daily activities. It is a terminal illness. There are approximately 100 types or causes of dementia; Alzheimer’s disease is one type of dementia, and is the most common type of dementia. Dementia occurs primarily in people who are over the age of 65, or in those with an injury or disease that affects brain function. While dementia is most commonly seen in the elderly, it is not a normal consequence of the aging process. Dementia over the age of 65 is more recently being referred to as older onset dementia, and under the age of 65 as younger onset dementia (YOD). All age groups go through the stage of early onset dementia. Alzheimer’s Disease (AD) and all dementias as currently not just incurable but untreatable. The available drugs for AD can alleviate some of the symptoms, but they don’t cure the disease. There is currently no treatment for the other types of dementia.
There are many differences in the experience of a person diagnosed with dementia under 65 vs being over 65. Obviously in reality I can only discuss my personal experience, but I have seen it through being a carer of older people with dementia. With certainty though, I can say I have thought about this question a lot, mostly because of my own diagnosis.
The picture above is of me with my mother and another member of the Cleve Probus Club… most people would not expect the younger person in it to be the one diagnosed with dementia. My mother remains deeply sad, and often horrified that her daughter has dementia.
Recently I was discussing with a friend about younger onset dementia being different to older onset dementia, and was told, ‘what a load of bollocks, older people have as many things to lose as you do’. I disagree with this person, and I do think in some ways, it is worse, perhaps in the same way as dying from cancer aged 48 as opposed to dying from cancer aged 75 is. We do have more life or living to lose, and therefore more lost dreams. The idea of not seeing our children get to 21, or marry, or to meet our grandchildren is distressing, and although older people lose their dreams too, they have experienced so many more of the dreams and experiences younger people are losing.
Imagine being diagnosed with dementia in your 20’s or 30’s; I think it is worse, the younger a person is, which is probably true for any terminal illness or serious chronic condition. Suffice to say, it is not a competition of how horrible it is, merely a recognition it is very different. For older people, I imagine losing a partner you might have been married to for over 60 years is worse, and definitely different, than when you are younger. The longer I am with my husband, I know, the more we ‘know’ each other, without having to say anything, and I suspect, the more I would miss him.
The losses and issues people with dementia of any age face varies significantly, but I felt it worthwhile blogging this updated list of the impact on a person under this age and their families, which highlights some of the differences to someone diagnosed over the age of 65.
- Prescribed disengagement – we are told to ‘go home, give up work, (and in my case give up study), and live for the time we have left’ (whatever living means after you’ve given up everything!)
- Usually are are still in paid employment, and there is no support to remain employed
- We may still have school aged children, or not have had their kids yet
- Once we have to give up paid employment, usually recommended early, our family income often halves as we become a single or no income family
- Our symptoms are not generally seen as disAbilities
- Our health costs can more than double
- Reduced self worth as our valued roles are diminished or completely negated
- Increase risk of depression, low self esteem, anxiety
- Travel costs, to accommodate health care appointments and other services required, increase
- There are almost NO age appropriate services
- Therefore many of the Aged Accreditation Standards are currently being breached in the (Australian) residential setting
- Childcare may be required because the person with dementia not being able to care for their children
- They may no longer be able to drive; this impacts us in a number of ways, including not being able to pick up their own children from school, take them or themselves to medical or other appointments; they may not be able to take elderly parents to appointments or on outings, and so on, and their partner (if they have one) becomes less able to work as they are required to assist with more
- Unequal social status
- The impact of the diagnosis of dementia is treated differently to other terminal illnesses, and no support services are set up as they would be for other terminal illnesses
- The loss and grief caused by a diagnosis of dementia is often under recognised and under treated, and complicated
- The fear of a loss of identity, the loss of privacy, of not knowing your children or grandchildren,
- Means tested carer allowance is not only unreasonable, it is not cost effective
- The negative impact, and the physical and emotional burden on their children, husband and older parents, as care givers, becomes significant
- Lack of support for meaningful engagement and pre diagnosis activities