Dementia is an increasingly common condition that often strikes fear into families and those living with he condition. But what is it and how can families cope?
Many families are touched by dementia. My own family has not been immune and we lost my Father who died with the Alzheimer’s in 2015. This experience was one of the motivations to start Home Instead North Oxfordshire in 2013. We have supported clients, and their families, in Banbury, Bicester, Brackley, Towcester and surrounding villages for the last ten years and this short blog is meant to share some of my personal and professional learnings.
Dementia is an umbrella name for a large number of diseases that affect the brain and can affect memory, problem solving, language and behaviour. The most common forms of dementia are Alzheimer’s Disease, Vascular Dementia, Lewy Body Dementia and Frontotemporal Dementia. The Alzheimers society web site details further information on types of Dementia. All these conditions are progressive meaning symptoms worsen over time.
Dementia is not an inevitable part of getting older and not everyone will develop it. Statistics relating to the occurrence of dementia include that:
Despite the increasing numbers the level of knowledge about dementia and how families can cope is very limited.
Everyone living with Alzheimer’s disease, or another form of dementia, are different and all the various symptoms are not necessarily present simultaneously in all people. In the early years of the condition there may be only a few symptoms but with progression more symptoms typically appear and become more severe. Symptoms typically include
No-one would wish to have a dementia diagnosis, but it is possible to have a good life for those living with the condition and their families.
One of the steps that can be taken is to encourage those with the condition to engage with, and reflect on, their past. Research has shown that talking with people living with Alzheimer’s, or another form of dementia, about their past can create positive emotional experiences. This is also true for older people in general whose reflections on their past can generate feelings of self-worth as opposed to thinking about their present or their future. The creation of scrap books or ‘life journals’ can be a helpful as pleasurable activity to do as well subsequently providing a resource to reflect on, perhaps often, as the dementia progresses.
Management of difficult behaviours is perhaps one of the most concerning issues for families. These may be related to unmet needs or a difficulty for a person expressing themselves. Those living with dementia may also have an emotional reaction including anger, embarrassment and tearfulness if for example they are struggling to cope with a given situation or being strongly encouraged to engage with something they do not wish to. Examples of challenging behaviours include:
Techniques to mange these behaviours are many and what may work with one person may not with another; what will also work one occasion may not work on another. Examples include:
A speedy response to issues can be helpful before something escalates and becomes unmanageable.
Living with someone and providing support to someone with dementia can be a difficult and isolating process. It’s important to look after yourself and realise you need not do this alone. The following are a list of resources and further support: