A cyberfriend suggested I write about this; “Alzheimer’s disease has one image, dementia another.” Last week at the launch of a DVD made by Domiciliary Care SA about younger onset dementia, I was asked by a woman if Alzheimer’s was dementia. This was curious to me, as the group in attendance were all people related to the service provision of people with dementia, and simply showed the ignorance that is still out there, not just within the community not affected (yet) by dementia, but by some working in that area.
It seems as if there are more stigmas associated with the term dementia. Often people refer to Alzheimer’s disease as ‘Old-timer’s disease’, almost jokingly as if it is a normal part of ageing. Whereas, the term dementia is more likely to be denied, and I have heard many say they are glad it is not dementia, it is only Alzheimer’s. There is a gross misunderstanding in the community; heightened by the fact the very organisations supporting people with dementia and their families are called Alzheimer’s Associations.
Recently I watched a DVD, prepared for families caring for loved ones with dementia for an organisation called Seniors Helpers. It was produced in partnership with Teepa Snow, a Dementia Care Specialist in the USA, and she talks about the difference between Alzheimer’s and Dementia. Her analogy is brilliant, and I think many will find it helpful. Dementia is a group of diseases, a syndrome rather than a diagnosis. It is an umbrella term for the many different types of dementia. She likens dementia to fruit. Fruit is a term for hundreds of types of fruit. Then there are subheadings like apples and oranges, and under those subheadings of fruit, there are different types of apples and oranges. Seniors Helpers is an international organisation, so if you wanted to see this DVD, contact them in your country.
Here is a simple explanation of dementia.
Dementia is a clinical syndrome of organic origin, characterised by slow onset of decline in multiple cognitive functions; 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. Dementia is not a specific disease; it is simply a word for a group of symptoms that affect cognition and thinking. There are approximately 100 types and causes of dementia; Alzheimer’s disease is one type of dementia, and is the most common making up between 50-70% of diagnoses of dementia. Dementia can also be caused by stroke and other medical conditions. Dementia occurs primarily in people who are over the age of 65, or in those with an injury or disease that affects brain function. Dementia can also be caused by drug and/or alcohol abuse. 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 known as ‘Older Onset dementia’, and under the age of 65 as ‘Younger onset dementia’. Alzheimer’s is currently not just incurable but untreatable. The available drugs can alleviate some of the symptoms, but they don’t slow the disease. There are currently no treatment options for the other types of dementia. I once wrote, Dementia represents the end of dreaming, a long and unforgiving one way odyssey into obscurity, clouded in a thick and unforgiving fog (2009).
Symptoms of dementia
The symptoms of dementia are similar whatever the person’s age. Dementia affects the brain in many ways and may cause:
- Memory loss
- Mood changes and inappropriate interactions
- Disorientation in time, day and place
- Difficulties in communication
- Inability to concentrate
- Personality changes
- Difficulties in recognition, understanding and comprehension
- Behavioural changes
Younger Onset Dementia
Any dementia beginning before the age of 65 is known as younger onset dementia. There are estimated to be approximately 16 000 Australians currently living with younger onset dementia but there are very few age appropriate services to cater for their specific needs. Through targeted promotion and advocacy, it is aimed to raise the profile of the illness and the impact it has on those affected by it.
Although the symptoms of dementia are similar whatever a person’s age, younger people with dementia have additional issues. They may:
- Be in work at the time of diagnosis
- Have dependent children still living at home
- Have significant financial commitments
- Be physically fit and behave in ways that other people find challenging
- Be more aware of their disease in the early stages
- Find it hard to accept and cope with losing skills at such a young age
- Find it difficult to access information, support and services aimed for people over 65
- Have a partner who is still in fulltime employment
- Often have the rarer types of dementia (such as fronto temporal and Lewy body) which present with more challenging behaviours
- Usually a poorer prognosis to older onset dementias