As more and more people around me are being affected by dementia I tried to answer some of their questions for Dementia Awareness Week.
What is dementia?
Dementia is the breakdown or changing of brain structures, resulting in impaired functioning in everyday life. This manifests through physical and psychological symptoms. If the brain is responsible for all that we are and all that we do just picture what happens when it begins to erode. That’s dementia.
It can be imagined as a series of ups and downs. Initially you have more ups and even when the downs occur they’re not too worrying and disregarded as normal aging. Grandpa saying something kooky, Mom forgetting an anecdote. The signs go unnoticed until there are more downs than ups, and the downs grow worse. Grandpa is now suspicious of everyone and can’t lift a spoon. Mom doesn’t remember her friends, your siblings or even you. Then the point of no return happens- the ups end and it’s an endless decline, a car down a steep hill with no breaks. And though the decline is predictable, from gradual to quick paced, the duration is not. A person with dementia after the decline may live for weeks or years.
What is the difference between dementia and ‘Alzheimer’s Disease’?
There isn’t one singular type of dementia. You may have heard the terms ‘Alzheimer’s’ and ‘dementia’ used interchangeably but Alzheimer’s is just one of the subtypes of dementia encompassed in this umbrella term.
Why do people with dementia have different symptoms?
Each subtype of dementia targets the brain differently so symptoms may also differ. The well known signs are memory loss and impaired physical abilities but there are also changes in attention, behaviour, concentration, judgement, language, mood, planning, problem solving, personality and visual and hearing impairment. Not everyone will exhibit the same symptoms and their intensity and frequency differs from person to person.
What is the prevalence of dementia?
Currently, dementia research is underfunded despite it effecting over 46.8 million people- that’s 5-7% of the global population over 60.
Who develops dementia and why?
Current findings have located the genes and proteins responsible and there seems to be a strong family link and certain factors show a higher chance of developing dementia: anxiety, depression, diabetes, hypertension, inactivity, obesity, vascular diseases and smoking. But ultimately, dementia does not discriminate. Early onset dementia is a possibility, targeting those over 50. Alzheimer’s Research UK has even pinpointed a man diagnosed with Alzheimer’s who is only 34.
How is dementia diagnosed?
Diagnosis follows a three step process: Ruling out other causes of symptoms with scans, conducting interviews via a psychiatrist, neurologist or psychologist and testing the patient’s cognitive abilities with assessments.
Is there a cure?
Unfortunately, there is no cure at present but regimes are being developed for dementia prevention and these promote socialising, exercising, a well balanced diet and engaging cognitive activities.
What can be done if you can’t cure it?
You manage it and slow down the initial progress of the disease, stretching the period with more ups, giving everyone a bit more time to prepare long term care plans. It must be managed as early as possible and it’s why an early diagnosis is encouraged. Counselling should be available to help accept the diagnosis and there should be an awareness that responses differ; some may launch into an action plan and some may fall into denial. Both are valid reactions.
As the disease continues the theme is to promote independence as long as possible, including the individual in every stage of planning. Medication such as anti psychotics are not always the priority. Instead, engage with creative activities according to their preferences, regular counselling and adhering to cognitive and sensory stimulation such as being read to, listening to music and cognitive stimulation therapy. Avoid isolating activities such as dining alone and watching television and promote socialisation. Even when the individual is no longer speaking they may communicate in other ways. Comorbid conditions such as depression or physical health problems should be immediately addressed.
What about carers?
Management of the disease takes carers into account. Dementia is unforgiving and can completely change a person and turn them into a stranger. It’s the incomprehensible loss of a loved one coupled with the responsibilities of attending to their body. Therefore, carers experience immense distress, be it a child, spouse, friend or sibling and are at a high risk of developing psychological and physical problems themselves. Management plans incorporate the counselling of carers to help them cope and psychologists may also provide information on dementia and training in skills on how to communicate, respond to stress and distress, engage someone who’s withdrawn and maintain the patient’s management plan. Such resources are also available online.
Why talk about this?
Dementia is not like other mental health difficulties, with success stories or miraculous cured cases. Whereas with other conditions there is a flicker of light at the end of the tunnel with dementia, for now there’s just the tunnel. To work in dementia feels like dissecting the problem further and further with no immediate solution. But we have to talk about it and Dementia Awareness Week provides the opportunity for such dialogue, allowing us to focus on achieving more ups than downs, waiting for the day the downs are gone for good.
*Peruse the resources of these organisations fighting the good fight for more information- Age UK, Alzheimer’s Research UK, Alzheimer’s Society, The British Psychological Society and Dementia Friends.