Challenges of dementia
Living with or caring for a child, spouse, parent or grandparent in the grips of dementia can be incredibly challenging. Situations can vary from the gut-wrenching sadness that happens when the person you love dearly can no longer remember your name or who you are, to the taking care of their personal hygiene when they have toilet accidents, or having to stop yourself from being annoyed with them when they display out-of-character temper tantrums.
Dementia is caused by disease, damage and deterioration of the brain, and it does not discriminate – it can affect anyone regardless of social class, race, academic achievements or age. Also, everyone’s experience of living with dementia is unique, not only because there are various forms of the disease, and it is possible for a person to have more than one type, but also because there is no one way in which it progresses.
It is estimated that just over 60 per cent of all cases of dementia are Alzheimer’s, making it the most common form of the disease.
This is followed by vascular dementia (previously called poststroke dementia) because this occurs from blockages or damage to blood vessels causing strokes or bleeding in the brain.
It is also suggested that other health conditions such as high blood pressure, high cholesterol, diabetes and heart disease can increase the risk of getting vascular dementia, and that some types of dementia are exacerbated by alcohol My friend’s mother in the early stages was clumsy – she would stumble, or things would fall out of her hands, and the family would tease her and wondered if she was secretly drinking.
From time to time she was having problems recalling names and recognising places, but the family got concerned when they noticed that she was also developing erratic eating habits and losing weight.
According to the Alzheimer’s Association, difficulty remembering recent conversations, names or events; apathy and depression is often an early clinical symptom of the disease.
Later symptoms include impaired communication, poor judgment, disorientation, confusion, behaviour changes and difficulty speaking, swallowing and walking.
In addition to which, 40 per cent of people with Alzheimer’s also have significant depression.
There is also some indication that changes in taste buds and smell, and loss of knowledge of flavours contributes to them having a desire for heavier flavours or sugary foods. Which is probably why on the odd occasions when my friend’s mum wanted to eat, she would ask for ice-cream, cake or biscuits.
The association also notes that in vascular dementia the symptoms are slightly different.
Impaired judgment or the ability to make decisions, difficulties in planning or organising, are some of the most likely initial symptoms, as opposed to the memory loss that is often associated with the initial symptoms of Alzheimer’s.
One of the common myths is that dementia is a geriatric disease. But young onset dementia, also known as working age dementia, can occur between the ages of 30 to 65, and usually presents with problems in walking, movement, co-ordination or balance.
Receiving a diagnosis of dementia is life-altering both for the patient and the family. It is known to create feelings of guilt, anger, and frustration on both sides.
The patient is suddenly faced with the realities of their diminishing independence, and the family struggles to care for someone they love with progressive behavioural and cognitive impairments.
My friend’s family relationships broke down because they could not agree on whether or not their mum should be institutionalised. Arguments ran deep and tempers flared mainly because they were all very distressed and worn down by their mum’s illness and the reality of her ultimate demise. In the midst of her mother’s illness my friend was diagnosed with clinical depression which some family members used as a weapon against her.
We know that the challenges of dementia run deep and wide, and for those who are having to care for loved ones I hope that others reach out to you with empathy and understanding.
Dr Yansie Rolston FRSA is a UK-based disability and mental health specialist advisor.
She is a social strategist and trainer who works internationally at various levels of government, business and civil society.
Contact her at yr@ efficacyeva.com