Coping with Dementia.

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?

What is this blog about?

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.

What is Dementia?

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:

  • Alzheimer’s Disease international estimated that there were 35.6 million people living with dementia worldwide increasing to 65.7 million by 2030
  • One In eight 65 year-olds have a dementia rising to nearly half of 85 year-olds and older
  • Among GP registered patients in Oxfordshire 5869 lived with dementia in 2019 according to Insight Oxfordshire expected to increase to 10,500 by 2027. In Northamptonshire this is expected to be 11463 by 2025 according to the County Council

Despite the increasing numbers the level of knowledge about dementia and how families can cope is very limited.

What are the symptoms of dementia?

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

  • Memory loss that disrupts family life.
  • Difficulty completing familiar tasks.
  • Challenges with planning and problem solving
  • Confusion with time and place
  • Trouble understanding visual images and spatial relationships
  • Misplacing things and losing the ability to retrace steps
  • Decreased or poor judgement
  • Withdrawal from work or social activities
  • Changes in mood or personality and
  • Problems with speaking and writing
  • Impacts on mobility and continence

How can families cope with dementia?

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:

  • Refusal to undertake personal hygiene or take medication.
  • Eating unhealthily or not participate in regular meals.
  • Striking out, push or get into altercations with family members or others.
  • Going outside without proper clothing.
  • Refusal to get out of bed.
  • Isolating themselves and refuse to engage.
  • Wandering from the house (e.g. at night).
  • Sexual inappropriateness and false accusations.

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:

  • Distraction and redirection from a troublesome situation, perhaps including reflections on past life using photographs and scrapbooks. This can include moving to another part of the house or somewhere else.
  • Give simple choices – a complex decision such as what do you want for lunch may be hard for someone with cognitive impairment and so offering a choice between two options may be helpful.
  • Apologising or taking the blame may remove responsibility from someone living with dementia who feels they may have made an error or mistake.

A speedy response to issues can be helpful before something escalates and becomes unmanageable.

You are not alone?

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:

  • Your local Home Instead Office provide a number of services to support families and those living with dementia including free dementia training for families. Contact at https://www.homeinstead.co.uk/north-oxfordshire/ 01295 237237
  • Dementia Oxfordshire are funded by Oxfordshire County Council, Buckinghamshire, Oxfordshire and Berkshire West NHS and Dementia Uk and provide advice information and support.
  • Dementia Active is a charity with an established track record in providing social activity groups for people with dementia.
  • Live well Oxfordshire list a number of support services or those with dementia across Oxfordshire.