Living with a diagnosis of dementia can have a big impact on a person – emotionally, socially, psychologically and practically. Many people with dementia describe these impacts as a series of losses.
The changes caused by dementia, to a person’s memory, thinking, senses and emotions, for example, can affect self-esteem, independence and relationships.
Dementia can affect someone’s ability to understand words and language, as well as affect their ability to remember certain words and formulate sentences. This can make communication more challenging for the person and those around them.
There are currently around 850,000 people with dementia in the UK. This is projected to rise to 1.6 million by 2040.
For far too long, families facing dementia have been failed by a social care system that is totally inadequate, hard to access, costly and deeply unfair. One in three of us born in the UK today will go on to develop dementia in our lifetime, yet still dementia care is the greatest healthcare challenge facing our society today.
Symptoms of dementia include forgetting recent conversations or events; losing items; struggling with day-to-day tasks, thinking and concentrating; getting lost in familiar surroundings; forgetting appointments; and having difficulty recognising faces.
It is a hugely difficult for those experiencing the symptoms, but it can be equally hard for loved ones to adjust to the new situation.
The Alzheimer’s Society and other organisation can offer advice and support for those experiencing symptoms as well as family, friends and carers who are affected. Here are some tips to remember in some of the most important areas.
Communication and dementia
If you’re communicating remotely, try to find ways that the person is comfortable with. People with dementia might find it difficult to learn new skills. Telephones are likely to be the most familiar way to communicate from a distance, and there are lots of different types of phones designed to help people with dementia, like larger buttons or pictures instead of numbers.
Tablets and smartphones can also be useful for video-calling, although it might be necessary to set video calling up for the person in advance, and then leave simple, clear instructions for them so that they will be able to use it when needed.
Continuing to communicate is very important as people with dementia may become isolated and withdrawn if they start to lose confidence, and may begin to avoid talking to others. The type of dementia a person has may also affect their communication. For more information about different types of dementia, visit the Alzheimer’s Society website.
Important things to remember include:
■ Make sure the person is included in conversations. Give them time to speak and try not to talk on their behalf. Ask others to communicate directly with the person rather than speaking only to those around them.
■ Listen to the person as closely as you can. Remove distractions such as background noise. This will make communicating easier for you both.
■ If the person finds verbal communication difficult, speak clearly and a little more slowly than usual (but not too slowly) and use simple words and sentences. You can also express meaning by changing the tone and pitch of your voice – for example, by making your pitch higher at the end of a question. However, it’s important not to talk to the person as if they are a child.
■ Try to maintain eye contact – as long as there is no cultural or other reason not to. This will help the person focus on you and let them know you are paying attention to what they are saying.
■ You might need to repeat yourself or answer the same questions during the conversation. Stay calm and speak with a kind and patient tone as much as you can.
■ Try not to stand too close to or over someone when communicating – it may make them feel intimidated. Sit at the same level as them in a well-lit area so they can clearly see your facial expressions.
■ Avoid asking too many direct open questions, such as ‘What do you want to do today?’ as these can be hard to process. Instead, try giving a couple of options, or just asking questions that need a ‘yes’ or ‘no’ answer.
Memory loss and dementia
Memory loss affects most people with dementia and can be frustrating and distressing both for the person and those, like you, who are important to them.
There are lots of ways you can practically support the person if they have problems with their memory. For example:
■ If they’ve forgotten something that was recently said to them, avoid telling the person they have already heard it. It won’t help and may make the person feel frustrated or distressed.
■ Mark a calendar with important dates and times (or try an electronic calendar which automatically changes the day and the date).
■ Buy a daily newspaper (or get one delivered) – the date and the day of the week are always on the front page.
■ Consider using visual reminders, such as a wall calendar, weekly planner or a noticeboard in a prominent place. They may want to record reminders in a mobile phone calendar, notebook or diary. Virtual assistants such as Alexa or Siri could also be helpful to remind the person about appointments.
■ Consider using more permanent reminders for tasks the person does regularly (such as a note by the door to remember their keys and wallet).
■ Use visual clues that explain where items go, such as pictures or photos with words on cupboard doors.
■ Keep important things like money, keys and glasses in the same place.
■ Put helpful telephone numbers by the phone where the person can see them
How to get support
There are a number of ways to get support from the people around you, including professionals:
■ Talk about the way you are feeling to friends or family members you trust. You will know who you feel most comfortable talking to. They might be able to help support you.
■ There are many professionals who can help. Often the GP is the first person you should see and can refer you to other professionals. These may include, for example, a counsellor or psychotherapist or an occupational therapist. You can also access counsellors privately – the British Association of Counselling and Psychotherapy can help find a qualified therapist.
Alzheimer’s Society offers a number of services that can help
■ You can call Alzheimer’s Society’s Dementia Connect Support line on: 0333 150 3456 or visit alzheimers.org.uk/dementiaconnect
Alzheimer’s Society’s Dementia Connect support line is open seven days a week providing information, advice and emotional support to anyone affected by dementia. It is a vital lifeline that provides personalised advice, information and emotional support in times of need.
They can respond to any query and can also provide signposting where appropriate. Calls cover a huge range of topics – both practical and emotional – from first noticing symptoms to end of life.
■ Talk to other carers on the Alzheimer’s Society’s online community, Talking Point
On Talking Point you can ask questions, share experiences and get information and practical tips on living with dementia with people who are going through or have had similar experiences. Whether you have dementia or know someone who does, we’re here for you.
It is free to use, open 24 hours a day and people can remain anonymous, to discuss sensitive issues and seek support more privately. You can connect with someone who is going through a similar experience, receive valuable support, and feel less isolated.
For more information on support visit the Alzheimer’s Society website: alzheimers.org.uk/get-support. You can also access these Alzheimer’s Society documents: Carers: Looking after yourself factsheet, Communicating factsheet and the Carers Guide on their website.
To sign the petition to #CureTheCareSystem and support Dementia Action Week (17-23 May 2021) visit alzheimers.org.uk/DAW. And for information, advice and support call Alzheimer’s Society Dementia Connect support line (0333 150 345) or visit our website.