Making sense of dementia
By Barry Jackman
Most people become aware of dementia when it occurs within the family. The word “dementia” conjures up all the misconceptions of mental illness and the stigma with which it is associated. It is not a disease prevalent among younger people so daily contact is rare. When it strikes, the early symptoms can be irritating for one’s partner and is often dismissed as a product of “age”; we all forget, repeat things, find difficulty doing certain tasks, get our clothes muddled up and wear things inside out, blame our partners for moving something we can’t find, put things in a safe place and forget where we put them etc. but when this behaviour begins to affect our daily routine and peace of mind, it is time for a reality check. This is when the we realise that “there might be something wrong” and a visit to the GP might help.
A referral to the Memory Service and a diagnosis of dementia might follow but this may only confirm what you already know. However, with an official diagnosis, it is possible to take advantage of the support available and this is growing all the time. It is also the beginning of a learning curve and a time to realise that getting to know more about the disease will provide the confidence to face each challenge as it arises. In banishing the ‘fear’ of the unknown, we place ourselves back firmly in control. There is no longer any need to feel isolated. The motto of the Alzheimer Café is “all in the same boat” and I have yet to come across a more appropriate one.
However, as with any illness, once diagnosed there is a prognosis but with dementia there is no universal rate of progression. Each person undertakes a unique journey at their own speed. What is more, the symptoms can be diverse. What can be determined, is where a person might be on that journey and what sort of care is appropriate and what caring techniques need to be employed. Caring for a person with dementia requires the skill of a good detective.
This is where an understanding of dementia and what is happening to a loved one becomes essential. Our training begins by defining dementia. There are well over 100 different types of the disease but 89% of all diagnosed are Alzheimer’s or vascular or a mixture of the two*Alzheimer’s Society figures. The symptoms of these are similar so it is possible to use a four-stage behaviour model in which the majority of people living with the disease will fit. This is where observational skills come into their own as this is how progress can be measured. After all, good care is dependent on knowing where a person is on their journey; the concept of “one care fits all” has no place in contemporary care. People with a rarer diagnosis (Lewy-body, Fronto-temporal, Parkinsons etc.) will have a defined prognosis and a greater in-depth understanding of their condition will be required by carers to provide an appropriate care plan. But these types of dementia are rare.
An important fact about dementia is that there is not only cognitive deterioration but loss of visual acuity as well. The combination of these two can be very unsettling and lead to agitation. If we mistake what we see, our brain will compensate. A coat hung behind a door can seem like a shadowy figure and be regarded as a real threat. A normal response, except that we do not make that mistake as we see it for what it really is. What must an image in a mirror seem like to a person with dementia; the reflection of a doorstop in a waste bin or the tiny flowers on a tablecloth? We can only imagine. People with dementia do not hallucinate. They mis-interpret what is seen and their responses are logical. The skill of a good detective really does come in handy.
Clearly, an understanding of memory and the reasons for its loss, are important. We explain this using a wobbly bookcase metaphor. Did you realise that there is more than one type of memory? Factual, sensory, visual, smell, sound etc. and they all play an important part in our recall. Elements of these are retained throughout the journey and when oral communication fails there are plenty of ways to compensate. You just need to know what they are and how to exploit them.
Getting old presents the normal challenge of wear and tear which a person with dementia copes with as well so an understanding of such things as reduced peripheral vision, loss of hearing etc. plays an important part when planning appropriate care. Our aim is to enhance the skill of providing good care to embrace the many physical obstacles that might prevent good care being carried out. We aim to provide the knowledge to make good carers excellent ones.
Emotions are universal and play an important part in the wellbeing of people living with dementia. A good carer is aware of the emotional range and will have encountered many situations that require quick judgement and appropriate interventions. We look closely at fear and anger to discover their origins. Care strategies are important when dealing with extremes of emotion and much emphasis is placed on “validation” when dealing with a person who is emotionally charged. This is where detective skills are absolutely essential and techniques to reduce high levels of emotion are taught and practised; a skill that is infrequently required but very useful when the occasion demands.
To those of us at the beginning of this journey, it may seem daunting but with knowledge comes understanding and understanding enables us to be in control.
If you think your partner may be showing signs of memory loss, make an appointment with your GP. Request a referral to the Memory Clinic. Visit your nearest Alzheimer Café. Contact Carers IW. Take that first step; from then on it gets easier. There are almost 2,000 people on the Island diagnosed with dementia and an estimated 1,000+ undiagnosed and most of them live at home–with a little help.