Where to start

It begins of course with diagnosis. Whether a dementia diagnosis is expected or comes completely out of the blue, it’s likely to have a significant impact on the person with dementia and those around them. Each person will be different and there is no doubt that there are considerations to be made along the way.

If your loved one has received a formal diagnosis you may have a name for their type of dementia. This doesn’t mean that they will have ‘textbook’ symptoms, or that the dementia progresses in a common way. However, that formal diagnosis can be the key to accessing services and support.

Firstly, it’s important to recognise the need to plan. Start by looking at the sections on this website that tell you what dementia is. It will help you understand what you’re dealing with.

Next, take a look around this part of the website. It will give you an insight into issues such as your rights as a carer, your own health and well being during what will be a stressful time, what to do in an emergency, respite care and some of the financial issues.

If you haven’t already, you should make your GP aware that you are a carer. If your GP is different from the GP of the person you are caring for, it is worth making both doctors aware of your role.

You’ll find details of various organisations you can contact too, with links from this website. Remember. Take time to plan. And that there is help available to you.

Some things to consider from the start

Dementia rarely exists in isolation, and many people who are living with dementia also live with other conditions, which can include

  • Hypertension (high blood pressure)
  • Digestive problems (including irritable bowel syndrome, constipation, diarrhoea and coeliac disease)
  • Heart problems (including chronic obstructive pulmonary disease)
  • Bone, joint and muscle problems (including osteoporosis and arthritis)
  • Breathing problems (such as asthma)
  • Skin problems (including eczema)
  • Learning disabilities
  • Many different cancers.

It’s important to be mindful of sensory loss in a person who is living with dementia. The person you are caring for may need glasses or hearing aids, which they will need to be assessed for, and they could develop different conditions related to their ears or eyes – for example, macular degeneration is a possibility as eyes age.

Be mindful that it isn’t uncommon for people with dementia to find it difficult to adapt to wearing glasses or hearing aids, or indeed refuse to wear them when, prior to their dementia they would have always worn them. As their carer you may feel this becoming a battleground issue, but if the person you are caring for is refusing to wear something, forcing the issue is only likely to inflame matters further.

It is known that pain is often poorly understood and treated in people with dementia, and as a person’s dementia advances they may find it more difficult to express where they have pain and request treatment, which can be particularly difficult and upsetting for you as their carer.

It’s vital too that you monitor the dental health of the person you are caring for. Over time it may become more difficult to maintain a good oral hygiene routine, and the expert input of a dentist who is trained in treating people with dementia is important to help prevent other health problems developing as a result of tooth decay. If the person you are caring for needs to wear dentures, you should be prepared for this becoming an issue too.

People with dementia are also at increased risk of dehydration and malnutrition. They may forget to eat and drink, or their tastes may change. As their carer you may feel very frustrated if the foods and drinks that you’re preparing aren’t being consumed like they were before. Try to experiment with different flavours (sometimes stronger flavours help) and textures of food, introduce more finger food, and in the case of dehydration, try to make sure that the person you are caring for has access to a variety of drinks as well as foods that are high in water, such as some fruits. Their GP can also prescribe food supplements if malnutrition is a concern.

As a person’s dementia progresses, they may develop dysphagia (swallowing problems). If you suspect the person you are caring for is struggling with their swallowing, you should ask their GP for a referral to a speech and language therapist. The speech and language therapist will carry out an assessment and may recommend that you thicken foods and drinks (a thickener can be prescribed), give advice on the best posture for eating, and offer different strategies with foods and drinks to make them easier and safer to eat, including pureeing food. If the person you are caring for is having problems with swallowing this can lead to an increased risk of chest infections, so it’s important to keep a close eye on them to catch any early signs of chest problems.

If the person you are caring for becomes immobile, they may become more susceptible to pressure ulcers. There are lots of pressure relieving products on the market, and if the person is becoming more immobile you should speak to their GP to get an assessment for mobility and details of any products that can help to prevent skin damage.

It is also important to remember that alongside physical health problems, a person with dementia could also have, or develop, mental health issues. Two of the most common examples are depression and delirium. These need specialist help, and medication or other therapeutic interventions may be offered. If you are concerned about the mental health of the person you are caring for, you should talk to their GP.

If the person you are caring for needs to go into hospital, you might like to consider completing a document to help hospital staff know a little more about the person. There is also a campaign, growing in momentum, to give carers the right to remain with the person they are caring for when they are in hospital. It is called John’s Campaign – For the right to stay with people with dementia in hospital www.johnscampaign.org.uk

If you would like to call to speak to someone about where to start, call Dementia Together for free on 08081 688 000