dementia
Support for you or someone you care about
Dementia is an umbrella term used to describe a range of progressive conditions affecting the brain.
Dementia is not a one-size-fits-all condition. It presents itself differently in each individual and progresses at different rates. Where some can stay in a state of mild decline for a long period of time, others seem to develop every symptom at once.
Understanding each stage can help make these transitions a little easier on you and someone you care about.
Stage 1 - No impairment
Everyone starts at stage 1. There are no symptoms of cognitive impairment, mental function is normal.
Stage 2 - Very mild cognitive decline
This stage can vary between typical age-related memory problems that most elderly people will face (such as forgetting certain dates) or could include some of the beginning signs of Alzheimer’s disease. Some of the side effects that correspond with this stage include:
Stage 3 - Mild cognitive decline
Stage 3 is where symptoms of dementia or Alzheimer’s can become more noticeable to friends and family. This stage won’t have major impact on your loved one’s day-to-day life, but you may notice these signs:
Stage 4 - Moderate cognitive decline
This stage is commonly defined as early on set Alzheimer’s or dementia. Symptoms of cognitive decline are apparent and your loved one should be seeing a health care professional. Signs at this stage include:
Stage 5 - Moderately severe cognitive decline
Stage 5 is when your loved one is likely to need help with routine tasks like dressing or bathing, requiring a home carer or a move to a supported living accommodation. Other symptoms include:
Stage 6 - Severe cognitive decline
Also known as middle dementia or moderately severe Alzheimer’s disease, this stage will find your loved one requiring help for activities of daily living such as using the bathroom or eating. Your loved one may also experience difficulty sleeping, increased paranoia or delusions, anxiety, and difficulty recognising loved ones.
Stage 7 - Very severe cognitive decline
Stage 7 is severe Alzheimer’s disease or late-stage dementia. Your loved one is unable to care for themselves, lives with severe motor and communication impairment, and may lose the ability to speak or walk.
If someone you know is becoming increasingly forgetful, encourage them to see their GP to talk about the early signs of dementia.
There are other reasons someone might be experiencing memory loss. However, if dementia is detected early, in some cases its progress can be slowed, and the person affected may be able to maintain their mental function for longer.
Signs of dementia
Although dementia isn’t just about memory loss, it’s one of the key symptoms. Others include:
You may like to suggest that you accompany your friend or relative to the GP so you can support them. This also means that after the appointment, you can help your friend or relative recall what has been discussed.
How to talk to someone you think has signs of dementia
Raising the issue of memory loss and the possibility of dementia can be a very difficult thing to do. Someone who is experiencing these symptoms may be confused, unaware they have any problems, worried or in denial.
Before starting a conversation with someone you’re concerned about, the Alzheimer’s Society suggests that you ask yourself the following questions:
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.
Caregiving in the early stages
Although most of your loved one’s immediate medical needs can be managed on their own in the early stages, you may need to assist with tasks associated with memory. This can include keeping up with GP appointments and helping manage financial matters, medications, and social and work obligations. At times, they may also need help remembering places, people, words and names. In the early stages, you will want to encourage them to:
Caregiving in the middle stages
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. During this time, you will need to learn to develop patience, flexibility and understanding as their day-to-day functions become more difficult to achieve. Your loved one might need assistance dressing, act out in strange ways or grow frustrated and angry with you, which can be very stressful. Be sure to take care of yourself and reach out to family, friends and other support services to make this transition smoother.
Caregiving in the late stages
The later stages will be the most difficult, as your loved one is now very frail and relies on you for most of their daily care. At this stage, encouraging your loved one to eat and sleep will grow increasingly difficult and they may lose the ability to walk steadily. During this time, an occupational therapist may help them stay mobile without falling, and speech therapists and nutritionists might give you greater insight to their 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. Staying on top of the latest research (google alerts), attending seminars from expert speakers and medical professionals will keep you up-to-date on new treatments and care techniques. Most importantly, find a supportive community! There are many support groups for caregivers where you can share your successes, frustrations, fears and joys with other caregivers. Remember, you are not alone!
Responding to someone in a crisis
Listen don’t offer advice or tell the person what they should do. Listen to their concerns, even if they don’t make sense and reassure that you’re trying to see things from their point of view.
Limit distractions turn down loud noises, retreat to a quieter space with softer lighting and a neutral temperature.
Keep a check of your own body language and tone of voice.
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.
It’s okay not to know what to do and it can be helpful sharing that. You’re not there to rescue the person; explain that you might need to ask for advice from someone else to help you better support them – crisis team for example.
If you’re aware of triggers for upsetting responses and behaviour, try and remove these or guide the person away from these.
Never put yourself if harms way and always remove yourself from harm if you can. Sometimes this is beneficial to both and can act as a diffuser.
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?
After the crisis
Crossroads Care – Dementia Carers Resilience Service
01709 464574
info@crossroadsrotherham.co.uk
The Carers Resilience Service is a short term intervention service for carers of people living with dementia, providing information, advice and practical support with the aim to build carers’ resilience. We work together with partners to enable the person with dementia to live at home for as long as possible.
Making Space – Rotherham Dementia Carer Support
Tel: 01709 910889
Email: RotherhamCarers@makingspace.co.uk
When a relative, friend or someone you directly care for is experiencing symptoms of dementia, it is good to know that neither you, nor they, have to be alone to meet the challenges ahead.
Rotherham and Doncaster Alzheimer’s Society
Tel: 01709 580543
Email: doncaster@alzheimers.org.uk
Information, advice and support on all aspects of dementia.
Alzheimers Society
0300 222 1122
Information and advice on all aspects of dementia. Open Monday to Wednesday 9am to 8pm, Thursday and Friday 9am to 5pm, Saturday and Sunday 10am to 4pm.
Dementia UK
0800 888 6678
Information and advice on all aspects of dementia. Helpline staffed by Admiral Nurses. Monday to Friday 9am to 9pm, Saturday and Sunday 9am to 5pm. Closed Bank Holidays.
My House of Memories allows you to explore objects from the past and share memories together. It can be used by anyone, but has been designed for, and with, people living with dementia and their carers.
The NHS App gives you a simple and secure way to access a range of NHS services on your smartphone or tablet.
You can use the app if you are aged 13 or over. You must be registered with an NHS GP surgery in England or the Isle of Man. You can also log in through the NHS website on a computer to use NHS App services.
HealthUnlocked is the world’s largest social network for health. Find and connect with people with a similar health condition. The service has over 700 online communities focused on health and wellbeing topics.