Dementia

Memory loss is one of the key symptoms of dementia, but other symptoms include:

• changes in personality and mood
• increasing difficulty with tasks and activities that require concentration and planning
• periods of mental confusion
• difficulty finding the right words or not being able to understand conversations as easily.

You could suggest going with them to see the GP to provide support. You could take notes to help them remember what was discussed after the appointment.

It can be difficult raising the issue of memory loss and the possibility of dementia. Someone who has these symptoms may be confused, unaware they have any problems, worried or in denial.

Alzheimer’s Society suggests before talking to the person, consider the following:

• What could be stopping the person from seeing the GP about their memory problems?
• Have they mentioned their memory problems?
• Do they describe their memory problems as a natural part of ageing?
• Could they be scared about what the changes could mean?
• Do they think there won’t be any point in seeking help?
• Are you the right person to speak with them? There might be someone else who they turn to for advice.
• Would they find it reassuring to have someone offer to go to the GP with them?
• When you do talk to them, choose a place that is familiar and non-threatening and allow plenty of time so that your conversation isn’t rushed.

In the early stages, your loved one will be able to manage most of their  immediate medical needs but you may need to assist with tasks associated with memory. This could be keeping up with GP and healthcare appointments and helping with financial matters, medications, social and work obligations.

In the early stages, encourage them to:

• maintain their independence
• get involved in activities they enjoy
• express their emotions
• establish a routine – this can possibly help delay the development of the disease

This can be the longest period that you will face as a caregiver, as the symptoms can go on during the majority of your loved one’s later years. You will need to be patient, flexible and understanding as your loved one’s day-to-day functions become more difficult. 

As they begin to need more help with basic tasks such as dressing they may get frustrated and angry and sometimes take it out on you. They may act in unusual or unexpected ways. This can be very stressful and worrying. It’s important that you look after your own wellbeing, get support from family, friends and support services. 

The later stages will be the most difficult, as your loved one will be very frail and rely on you for most of their daily care. At this stage, encouraging them to eat and sleep will grow increasingly difficult and they may lose the ability to walk steadily. An occupational therapist may be able to help them stay mobile without falling, and speech therapists and nutritionists can support you with their changing speech and eating patterns. Incontinence, severe memory loss and disorientation, immune system problems, repetitive movements and strange or unusual behaviour must all be managed during this stage as well.

Watching a loved one live with dementia is never easy, but with the proper tools and support in place, you can help them navigate their symptoms to live their life to the best they can. Read up on the latest thinking and think about joining a support groups for caregivers where you can share your successes, frustrations, fears and joys with others going through the same thing. Remember, you are not alone!

• Listen to their concerns, even if they don’t make sense, and reassure them that you’re trying to see things from their point of view.
• Create a calm environment. Turn down loud noises, move to a quiet space with softer lighting and a neutral temperature.
• Keep your own body language and tone of voice neutral, calm and reassuring.
• Don’t ask too many questions and keep questions simple and short.
• Ask them what would help right now.
• Before doing something or calling someone else, ask if this is okay with them.
• Remove any triggers that upset them, if you’re aware of these.
• Never put yourself in harm’s way.

It’s okay not to know what to do and it can even be helpful telling the person this. You’re not there to rescue them; explain that you might need to ask for advice from someone else to help you better support them – a crisis team for example.

Remember a crisis is something that is outside of your control, is intensely difficult and could lead to harm. In a crisis you need to get support. There may be underlying reasons for the crisis that need medical attention, like an infection.

Who can help?

• GP
• NHS 111
• 999 if in immediate danger
• Local mental health crisis teams
• Social care team

After the crisis

• Take time out to digest what has happened.
• Talk over your thoughts and feelings with someone you trust.
• If it helps, write down your thoughts and feelings – get them out of your head and on paper.
• Access support – IAPT, carers support services.
• When things are calm, think about a future crisis management plan.