The Various Stages Of Dementia: What To Expect

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It’s important for carers to know of the various stages of Dementia for proper care and support. Presenting the first in a series of articles by Dementia Care Consultant, Amrita Patil Pimpale on what to expect at every stage.

Like Columbus, I am on a voyage of discovery. My route is not exact and I must make adjustments as I go along…unlike being at sea in a storm, I know that the voyage is only going to become more difficult. It may become a typhoon or hurricane, depending on where it takes me. This storm will not pass: I have to make suitable preparations before the force 12 hits. Let me tell you that I am lucky: I have very good friends who will be with me on the stormy ride ahead.’
Voyager (2005), ‘Living with Dementia’ by Alzheimer’s Society

It’s a known fact that the ability of a person with Dementia is going to deteriorate, and the person, his family, friends and carers need to plan well for eventualities. A person with dementia will require continued support as they progress with the disease; the deterioration in abilities comes with the fear of losing independence, insecurity about health, finances and in general losing a sense of self. Hence the support of good family, friends, and empathetic carers plays a crucial role in maintaining the well-being of people with Dementia. This support system of carers (family and formal) will have to offer more and more support to a person with dementia as their disease progresses, causing impairment in communication and functional abilities.

It’s important for carers to know the various stages of Dementia. These are roughly divided into three. The life expectancy of a person with dementia is unpredictable, and the disease can progress for up to around 10 years. Alzheimer’s Society reports that it is estimated that a third of people with dementia at any one time will be in the later stages of the disease.

Let me explain what to expect from the different stages of Dementia.

Stage 1 : Mild Dementia — Setting out on a journey
The first stage that is Mild Dementia may start with minor lapses in memory and behaviour. These symptoms may go unnoticed to family/friends around the person suspected of having dementia. As time passes, in the mild stage itself, the incidences of forgetfulness, changes in mood and apathy towards activities become frequent and the person with dementia does become aware about the fact that something could be amiss. As the disease progresses, these abnormalities in behaviour might be noticed by family members and people around the person. This stage generally provides alarming changes in the person and ideally leads to the diagnosis. The person may still appear to do daily activities of living and communicating fairly well. However, they will be advised to stop driving or travelling alone, cooking (from safety point of view) and asked to retire from work.
At this stage, the person may also lose interest in pursuing occupational activities, hobbies or having social interactions, which they did enjoy earlier. A person with dementia may feel added pressure from family and friends to take up activities, things that stimulate their brains like puzzle, brain games or taking up a healthy routine of exercising or walking. With the lack of interest and apathy, which is a symptom of dementia, the person may feel disheartened, agitated and anxious if they are forced to take up activities that they are not interested in doing. The person will be able to take up short, simple activities and can complete them with the help of carers.

Stage 2 : Moderate Dementia
In this stage, cognitive difficulties and associated behavioural problems become increasingly dominant. The person will find difficult to express themselves with appropriate use of language. They may even forget names of family members and close relatives. They will appear to be more withdrawn while doing an activity, with struggle to complete an activity. Family and carers will find it challenging to get the person to maintain personal hygiene. The person will require more care and monitoring than the first stage as they will have an increased risk of wandering and may not be able to differentiate between strangers with false intentions.
At this stage, persons with dementia will require help with taking medicines, may have confusion with day, year, seasons, etc. The person can still do many activities of daily living but will require more assistance from his/her carers than the first stage. Both family and formal carers will require more support, guidance from professionals to offer appropriate care in this stage of dementia as personality and behavioural changes are prominent and may include suspiciousness and delusions.

Stage 3 : Severe Dementia
In this stage, the person with dementia has severely impaired communication. They will struggle to eat by themselves, may need food that’s easy to swallow and need help with personal care, to move around. Persons with dementia tend to get more increasingly isolated in their own world around this stage. Lack of communication makes the person feel totally cut off from the outside world. Caring demands increase and full time care or residential care may be required now. For the family and friends, this stage is emotionally challenging as they see their loved one sinking in, unaware of reality and environment around them. Even in later stages, it is possible to be provided stimulation activities for the person, which are sensory like music therapy, aroma therapy, reminiscence therapy, among others.

The ‘stage theory’ provides us an approximate layout of the progression of the disease. However, it is important to know that some people may move forwards and backwards between these stages. In dementia every person responds differently to the disease, hence it is important to plan the care according to the individual’s needs, personality and biography, etc. The strategy that would be the best fit for care will be to concentrate not on what they ‘cannot do’ but on what they ‘can do.’

About Author

Amrita Patil Pimpale

Amrita Patil Pimpale is a Dementia Care Consultant based in Mumbai. She is founder, lead consultant in Echoing Healthy Ageing, a social enterprise working in Dementia care sector, focusing on home based therapies, counselling & Dementia care training for family carers and professionals. She's the Winner of Social Entrepreneur ‘Unltd India Award’ for 2012 and 2013. She's a Certified Trainer of Person centred dementia care from University of Bradford, UK and a Dementia care mapping advance practitioner. She has designed and delivered training for care staff (dementia care), NHS nurses in England and has internationally published research papers on dementia care.