People with dementia can be very vulnerable and may not be able to communicate their wants and needs to other people. It is therefore up to the people who are caring for the individual to make sure that their interests are being protected, and to ensure that they are being treated equally and fairly and do not face any discrimination. Many people do not understand dementia and do not know how to go about trying to communicate with someone living with the disability that is dementia. It is easier for them to ignore the person than to make any attempt to include them. It is this lack of knowledge and understanding which leads to inequality, discrimination and isolation. To show that it is possible to have diversity, equality and inclusion when working with people with dementia we need to first understand what each term means.
Diversity is about difference; everyone is different, we are all unique. There are basic differences such as gender, race, culture, ability, beliefs, age, sexual orientation etc. Then there are more specific differences between people such as their likes and dislikes, they jobs they did or still do, hobbies and interests they might have, their unique life experiences etc. Equality means treating people as equals and respecting their differences. It means enabling people to have “equality of opportunity” to live a safe, happy and productive life despite their differences. Inclusion means including people rather than leaving them out. If, for example, a person has a disability which affects their mobility then efforts should be made to make things accessible for them, such as putting ramps into buildings instead of steps. Or a person with a hearing disability should not be excluded from going to the cinema, subtitles should be available.
To ensure that a person with dementia is being treated equally and fairly the first step would be to find out about that person, to discover their unique needs and preferences and to give the person choices. Each person has the right to make their own choices and to live their life as they choose as far as that is possible. The needs of the individual are what is important and any care given should be tailored to meet those needs. This is the basis of Person Centred Care. Once a person has received a diagnosis of dementia and they have come to terms with the turmoil of receiving such news, they may wish to discuss with others how they want to manage their condition as it progresses. These wishes should be respected and followed as the person would like as closely as possible. A life story book compiled by the person themselves or with help from family, friends and neighbours, can provide invaluable information, as it gives an insight into the person with dementia, and can be a very helpful communication tool.
The history of a person can sometimes explain their behaviour and, once you understand why a person is acting in a certain way, it may be possible to use this information to discover ways to include the person and make them feel valued and that they matter. For example a person may have been a nurse working in a busy hospital, so involve them and suggest that they help you to make the bed. Or a person may have worked in a restaurant so let them help to lay the table. This includes the person and promotes self-worth and will boost their confidence to maybe encourage them to try other things. A person’s life history should include details about their life, their experiences, their likes and dislikes, their hopes, fears and dreams – anything that is or was important to them. Once you have this to refer to you will be able to communicate better with that person and to ensure that their needs are being met. The information in the life history helps you to get to know the person and to see them for who they are and not just to see the dementia.
Recognise that not everyone will want to do the same activities, not everyone will want to join in with a sing-song or take part in a quiz. Find out what a person does enjoy and design activities to suit them. It is important not to stereotype people as this can lead to discrimination. People with dementia are often treated like children, they are criticised for what they can’t do instead of being encouraged for what they can do. Or it is assumed that they can do nothing or make any decisions for themselves. This is discrimination and can result in making people feel like they no longer matter and can lead to isolation and withdrawal. Every person with dementia will have their own unique experiences of their disability, some will have similar experiences to others but many will be different due to factors such as age, ethnicity, or having a pre-existing learning disability. It is easy to assume that dementia occurs in old age (people over 65), however around 2% of people with dementia in the UK are aged between 50 and 65. When a younger person is diagnosed with dementia they can have quite different needs than an older person.
It can be difficult for that person to get access to specialist help in the early stages. There needs to be more awareness of the occurrence of dementia in younger people as they are likely to have more commitments and will have to make long term plans for their future. A younger person with dementia may still have dependent children, or dependent parents. Their spouse may have to face giving up their own career or interests to become their carer. The individual’s career will also be affected, though they may be able to continue working in the early stages, plans will have to be made, and the progression of their dementia could have serious financial consequences when they can no longer continue to work. Changes in behaviour may be more challenging in a younger person. The future care of the person will need to be discussed with the individual to ensure that their continuing needs and preferences will be met as their dementia progresses.
When working with a person who is from a different ethnic or cultural background it is important to gain as much knowledge as you can about how dementia is viewed in their culture or country. Some countries do not recognise the disability and may not even have a word for it. Once again being able to know the life history of the individual is very important. Once you know a person and what their beliefs, hopes and fears are, you will be able to see the person and be able to fulfil their own particular needs. Learn about customs or religious beliefs, learn about any special diets, and maybe learn a few words or simple phrases in their language. People with learning disabilities are less likely to receive an early diagnosis of dementia.
Changes in behaviour may be noticed first as opposed to memory loss. Because of their learning disability the person may have difficulty in understanding the implication of their diagnosis. They may already have a care or support plan in place and have a support system set up for them. This information should be used to continue to support the person and to fulfil their changing needs as the dementia progresses. Working in a person centred manner is the best way to ensure that the very diverse needs of each person with dementia are being met. To recognise that everyone is different with their own unique needs and preferences is vital in ensuring that diversity, equality and inclusion is recognised for people with dementia. Working this way goes to show that it is definitely possible to have diversity, equality and inclusion when working with people with dementia.