Do not shut away a condition that simply cannot be ignored

By Padraic Garret, Service manager, disability and dementia, Jewish Care.

Being diagnosed with dementia is devastating for most people.

The condition turns people’s lives upside down, so when we talk about living well with it, eyebrows are often raised and people struggle to understand how this is possible.

‘Living well with dementia’ isn’t about pretending the condition isn’t there and carrying on as normal. Many people attempt this early on and struggle by, but eventually can’t hide it any longer and feel they have failed. Instead, it is about understanding the condition and continuing with one’s interests and adapting to changes.

The good news is our understanding of dementia and dementia care has moved on. There is still a long way to go but things are moving in the right direction and Jewish Care is at the forefront of dementia care not just in the Jewish community but in the social-care world.

We are continually developing our services to ensure people living with dementia continue to enjoy life and get fulfilment. We base this work on four key ingredients: vocation, recreation, relationships and one’s own sense of spirituality; essential elements, we believe, not just for people with dementia but anyone looking for meaning in life.

While vocational activities are essential for some, many older people both with and without dementia see retirement as an opportunity to enjoy pastimes and recreation. Those who have always had an adventurous streak may look to activities run by ‘Dementia Adventure’, which offers opportunities from parkland walks to sailing trips for people living with dementia to connect to nature and do something different.

There is a growing number of specialist activities for people living with dementia and their carers, from discussion and singing groups to gardening, drama, cinema clubs and laughter yoga. Recreational activities create new opportunities and reignite past passions – important sparks for people living with dementia.

People often talk about a sense of having lost a person with advanced dementia. This is very real for loved ones when verbal communication is lost through the condition. Research suggests that music connects with key areas of the brain, bringing back memories that may have been dormant for some time and breaking through communication barriers. The Music for Life project uses it as a self-expression vehicle and for more than 20 years has taught us to understand that, with the right support, patience and skill, people living with dementia can find ways to express themselves. They are very much alive and with us.

A dementia diagnosis is often followed by a withdrawal of extended family and friends’ networks. Carers in particular often tell us friends and relatives just disappear, unable to deal with the change in the person and finding it easier just to ignore.

This has an extremely detrimental effect on people living with dementia. Friends and families may find it easier to stay in contact when they have more information about dementia and this is why the Dementia Friendly movement is so important. Traditions and rituals help people connect to their sense if spirituality.

From Friday-night candle lighting to annual seder nights, these experiences are often ‘hard wired’ into longer-term memory. It is essential for carers, family and friends to keep expectations realistic and enjoy the special moments. It isn’t easy, but the alternative is to close the door on your loved one and try to shut away a condition that can’t be ignored.

People living with dementia need to be given the opportunity to be included and accepted within society as valued citizens.