Dementia: Let’s talk about it

Dementia-and-hearing-lossAll around me I see people who are being affected by dementia and they have so many questions. The answers are out there but they can become mixed up and muddled. Therefore, for Dementia Awareness Week I’d like to talk a bit about dementia and what we can do about it. 

Dementia is the breakdown or changing of brain structures, resulting in impaired functioning in everyday life. This manifests through physical and psychological symptoms but not everyone will exhibit the same ones, and their intensity and frequency may differ from person to person. There also 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 types of dementia encompassed in this umbrella term.

Because each type targets the brain differently 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. 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.

Unfortunately, it’s a story with no happy ending. Currently, dementia research is underfunded despite it effecting over 46.8 million people- that’s 5-7% of the global population over 60. Though there is no cure, current findings have located the genes and proteins responsible.

DementiaThere also seems to be a strong family link and certain factors show a higher chance of developing dementia: anxiety, depression, diabetes, hypertension, inactivity, obesity, and smoking. Therefore, regimes are being developed for dementia prevention and these promote socialising, exercising, a well balanced diet and cognitive activities- all generic aspects of healthy lifestyles. But ultimately, dementia does not discriminate. Though associated with those who are 65 or above, early onset dementia is also a possibility, targeting those over 50. Alzheimer’s Research UK has even pinpointed a man diagnosed with Alzheimer’s who is only 34.

Receiving this 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. But why all this fuss over an incurable disease?

See, dementia can be imagined as a series of ups and downs, the pathway from mild to severe. Initially you have more ups and even when the downs occur they’re not too worrying and disregarded as a normal sign of 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.  So what can be done if you can’t cure it? You manage it.

By managing dementia, you can slow down the initial progress of the disease and stretch the period with more ups, giving everyone a bit more time before the inevitable. It must be managed as early as possible to work and it’s why an early diagnosis is encouraged. Initially, 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 the priority and should be a last resort. Instead, engage them with creative activities according to their preferences, regular counselling and adhering to cognitive and sensory stimulation such as being read to or listening to music. Avoid isolating activities such as dining alone and watching television and promote socialisation, even when the individual is no longer speaking. It especially helps to form groups with others’ diagnosed with dementia. Comorbid conditions such as depression or physical health problems should be immediately addressed.

Management of the disease also takes carers into account. Dementia is an unforgiving, dispassionate thief of the human soul that can completely change a person, turning them into a stranger, before reducing them to an empty shell. It is 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. 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.

Dementia is not like other mental health difficulties. There are no success stories or miraculous cured cases. Whereas with other conditions there is a flicker of light at the end of the tunnel with dementia there’s just the tunnel. And it engulfs you. 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 UKAlzheimer’s Research UK, Alzheimer’s Society, The British Psychological Society and Dementia Friends

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