Dementia Journey

Signs, symptoms, and how to help 

What does "dementia" mean to one's life and the lives of family and friends when the diagnosis is delivered?There is often a lack of awareness and understanding of dementia, resulting in stigmatization and barriers to diagnosis and care.

Whether it be the most common form, Alzheimers (60-70%), Vascular or Frontal Lobe Dementia or others, the signs have often been there for up to two years before the quirky instances and happenings are picked up as something more serious than forgetfulness associated with age. Although dementia affects mostly older people, it is not a normal part of ageing.Worldwide, there are some 50 million people who have dementia, with 10 million new cases each year.

Dementia has a physical, psychological, social, and economic impact, not only on people with dementia, but also on their carers, families and society at large. While communities and governments grapple with the increasing needs of people with Dementia and their carers, funds are being poured into research and infrastructure to find cures or ways of slowing the process of deterioration.

Signs and symptoms

Dementia affects each person in a different way, depending upon the impact of the disease and the person's personality before becoming ill. The signs and symptoms linked to dementia can be understood in three stages.

Early stage: the early stages of dementia are often overlooked because the onset is gradual. Common symptoms include:

●forgetfulness

●losing track of the time

●becoming lost in familiar places

Middle stage: the signs and symptoms become clearer and more restricting. This is usually the time when families start to question some of the symptoms from Early Stage and realize there are more underlying issues happening.Often this stage is when diagnosis is sort.

These include:

●becoming forgetful of recent events and people's names

●increasing difficulty with communication, often repetitive conversation

●needing help with personal care

●experiencing behavior changes

●difficulty with meal preparation

●finding it increasingly difficult to perform simple tasks of daily living

Late stage: the late stage of dementia is one of near total dependence and inactivity. Memory disturbances are serious and the physical signs and symptoms become more obvious. Symptoms include:

●unaware of time and place

●difficulty recognizing relatives and friends

●increasing need for assisted self-care

●difficulty walking

●difficulty swallowing

●experiencing behavior changes that may escalate and include aggression

Although the long term diagnosis seems overwhelming and daunting to absorb and accept, the good news is that a good quality of life can continue for both the person living with dementia and their family and carers with the correct guidance, support and looking at "What I can still do" and NOT focus on "What I can't do".So many times families tell me "But mum can't really contribute anything anymore, she doesn't even remember that we went out for lunch.I don't know what to talk to her about because she doesn't respond".This is not only distressing for the family but for the person, as they feel useless, a burden and without a role in family and community.

Dementia is about "living in the moment, enjoying life in the present", whether the activity or outing is remembered wholly or even just parts of it.The smiles, laughter and pure joy of the moment is retained emotionally if not cognitively and this adds to well-being on a day to day basis. Mental, physical and social stimulation are vital. The more the brain and body remain active, the easier life is for everyone.There are so many ways to spend time together and improve quality of life in meaningful and connected interaction.When one's spirits are lifted there is less chance of depression, anxiety and irritability.

Here are a few suggestions that can work wonders:

●Stir memories - photo albums, newspaper clippings to reminisce about their lives.Short term memory may be lost but long term memory is present for quite some time.It is comforting to travel down memory lane.

●Encourage self-expression - word searching and holding the thread of conversation become increasingly more difficult but self-expression doesn't have to be in words.It can be in drawing / painting, dance, singing.Even though speech has deteriorated, often the words to familiar songs are sung confidently and clearly.

●Exercise - Physical activity can have lots of benefits for people with dementia. It can help regulate their sleep and prevent restlessness and sleeplessness in the evening. Exercise promotes natural tiredness as sleep patterns can change as dementia progresses. It can also help maintain a positive mood and lower the risk of developing depression.Exercise doesn't have to be walking; it can be swimming, water aerobics and much more.

●Favorite activities / hobbies - People living with dementia had a life before the diagnosis so let's try to continue this life for as long as possible.Hobbies are many and varied and even completing a small part of the puzzle or painting will promote pride and achievement.

●Cooking and household chores – Again, even if a small part of the process is completed, the sense of achievement is great.Promote activities such as making a cup of tea (whatever part of the process is doable), stacking and unpacking the dishwasher, loading the washing machine or hanging out and folding the washing.

●Socialization - Just a trip to the coffee shop can be a wonderful activity, as socialization is so important to promoting quality of life.So many elderly people are isolated and lonely which only increases their risk of dementia along with the disease taking over their lives.

●Music - Research has proven that music has a calming and positive effect on people with dementia.Especially during the afternoon times when often people become agitated and pace (known as sundowning), music can soothe the soul.

●Animals - It's a known fact that animals promote well-being, love and peace to not only people with dementia but most of mankind.The tactile process of patting an animal and receiving unconditional, non-judgmental love works wonders.

Caring for someone with dementia is often a long, exhausting and overwhelming task and carer fatigue and burnout is extremely common.Support groups are desperately needed as safe havens for families and carers to offload and discuss their feelings, frustrations, strategies and basically to feel they are not alone in this journey.

As a Dementia Consultant, my mission is to ensure a continued quality of life for people with dementia.