Caring for somebody with Dementia

Our book Living with Dementia in Devon: A Carers Guide will answer many common questions:

https://devoncarers.org.uk/wp-content/uploads/2020/11/Living-with-Dementia-booklet.pdf

What does this diagnosis mean for the cared person and us?

A diagnosis of a dementia will mean many thoughts and feelings for the person with the diagnosis and for their close family, mainly around anxiety about the future.

How you respond to these concerns will be personal. We cover the possible responses of the person being diagnosed in Q2.

For close family there will be questions about the impact on relationships, finances, managing health concerns and on family life in general – will we still be able to go on holiday? Can the person still drive? What will we say to our friends?

There are answers to all these questions on reliable websites such as the Alzheimer’s Society https://www.alzheimers.org.uk/ and Dementia UK https://www.dementiauk.org/ which incorporates Young Dementia (meaning dementia in people under 65).

If the diagnosis was made in Devon, it is likely that you will have been introduced to a local Alzheimer’s Support Worker and been given a pack of information which the worker can help you look through to find support that works for you.

Rarer dementias have their own organisations and websites, for example the Lewy bodies Society https://www.lewybody.org/ and the Rare Dementias Support Group https://www.raredementiasupport.org/

All these organisations have phone lines, so you can contact them direct with your questions.

You may find local support from people in a similar position as yourself in carers’ groups. Currently most of these are meeting by using online apps such as Zoom or by phone. A list can be found on our website https://devoncarers.org.uk/carers-support-groups/ You will need to contact the organiser to find out what the current arrangements are.

Take your time with all of this. Prioritise what you want to read and do. You may not even think of yourself as a carer. You may be determined to carry on as usual. As the dementia progresses, it will become more apparent which areas of your life will need to adjust.

In general, there are some things that will need to happen:

Getting prepared financially and legally. Dementia is a disease of the brain. Meaning that it will decrease the person’s abilities in thinking and communication.

Discussing plans to manage finances and health care using Power of Attorney needs to be done while you can both have your say. The Alzheimer’s Society https://www.alzheimers.org.uk/get-support/legal-financial and Age UK https://www.ageuk.org.uk/information-advice/money-legal/ have good advice on this.

Build in breaks for yourself: Dementia can shake a person’s feelings of security (see Q5). Routine and getting use to a small group of familiar, trusted people rather than relying on one carer can help the person feel safe and encourage them to keep active. This will allow you as the carer to continue a life that you see as purposeful, in the knowledge that the person you care for is also having time that they see as enjoyable. The balance between being a carer, being partner/son/daughter and having time for yourself will be ever changing – all are important.

Look for opportunities to slow down the progress of the dementia and lessen your own risk of dementia: Currently there is no cure for dementia. However, research shows that there are a number of actions you can take to slow its progress and reduce the risks for yourself.

  • Socialise: keep going to community groups and keep seeing friends and family. Feeling we belong, laughter and shared interests are good for our mental health.
  • Keep active: what is good for the heart is good for the brain. The brain needs a supply of oxygen and blood. Good cardiovascular health is important to sustain this, plus, exercise, especially outdoors, lifts the mood.
  • Challenge yourself: learning builds new connections in the brain. For people with dementia, learning new skills might be difficult so using what you can still do is important.
  • Look after your general health: eating well, getting a good night’s sleep, drinking only in moderation, keeping up with medical appointments – all the usual advice still applies. You will both need good health to enjoy life to the full.

My cared for person doesn’t see they have a problem

People will respond to the news of a diagnosis in their own way. Indeed, they may not even agree to see a GP. Not acknowledging your dementia is common. We can understand this, no one wants to receive bad news and the future is unknown.

As close family, you can write to their GP with your worries. It is helpful to keep a diary of dates and events that have caused you concern. Where possible, be open with the person about what you have noticed. You can use phrases that might be acceptable such as ‘let’s see what can help with your memory’ or mention it at another appointment that they would be attending anyway such as a medication review.

You may describe the person’s reaction as being in denial. Alzheimer’s reduces people’s short-term memory so ’denial’ might be because they have forgotten the appointment and what was said. It might be the person’s way of coping with the bad news. Or it might be that they really don’t know there is anything wrong.

For you, it is helpful to have trusted friends or professionals to talk to about your worries. For most organisations, including Devon Carers, you do not have to have the person’s permission to contact them: the person does not have to see you as a ‘carer’.

Looking for opportunities to live well is important for both of you.

For information on supporting someone who doesn’t acknowledge their dementia visit https://www.alzheimers.org.uk/get-support/help-dementia-care/understanding-denial-lack-of-insight

What support can I get for free?

As a carer, you have a right to a free Carers Assessment. Contact Devon Carers to request one on 03456 434 435. This conversation will help you identify what is going well and where you might need support now and in the future. For the person you support, they are entitled to a free Adult Social Care assessment for their needs.

As a result of these assessments, you might want to start looking at getting some outside help. For example, helping the person you support to use the shower or bath.

Occupational Therapy advice is free. An OT can advise on making changes to your home that will enable the person to be as independent as possible, for example changing the bath to a wetroom. Adult Social Care Teams can help you plan for any changes including a financial assessment to identify what funding might be available for you and what you might need to contribute yourself.

Advice for carers is also available from:

Devon Carers offers a vast amount of helpful information about their free services: www.devoncarers.org.uk

Age UK has advice on applying for financial support such as Attendance Allowance, Carer’s Allowance, Council Tax reductions: https://www.ageuk.org.uk/information-advice/money-legal/

Citizen’s Advice: https://www.citizensadvice.org.uk/family/looking-after-people/carers-help-and-support/
NHS https://www.nhs.uk/conditions/social-care-and-support-guide/support-and-benefits-for-carers/

Locally, most carers groups are free or require small donations again visit our website https://devoncarers.org.uk/carers-support-groups/ but check with the groups individually for their arrangements during COVID-19.

Changes in behaviour

Having a dementia will impact on the person’s behaviour. For example, the typical early sign for someone developing Alzheimer’s is damage to their short-term memory. The person repeats questions because they do not remember having asked it before or cannot remember your answer.

For family members, it is helpful to gain knowledge of how the dementia is likely to affect the person. This will depend on a number of things, including:

  • What type of dementia the person has: the symptoms vary, visit https://www.alzheimers.org.uk/about-dementia/types-dementia to find out more.
  • Other health issues: we can be less tolerant and more irritable when we don’t feel well. Being in pain, feeling tired, feeling low or being confused may be symptoms of the dementia, but they could be symptoms of other conditions, some of which might be reversable. Speak to the person’s GP about new symptoms or anything you are concerned about.
  • The person’s abilities: As dementia progresses, the person’s abilities will decrease. If this happens gradually, you may have time to adapt. For example, simplifying finances so the person does not have to manage a lot of information; buying more appropriate items for the home, such as plain plates and mugs with larger handles to make mealtimes easier; (speak to your OT about which is best for you) having people round for shorter visits so the house is not so noisy and there is time for the person to rest.

You might not always see the person you care for getting frustrated. If the person does become angry, pause before responding. If you think you are in danger, then leave the room and make yourself safe. If you think it is safe, be reassuring. Ask what you can do to help. Listen to their concerns and take them seriously. Do not dwell on what is going wrong. Look for things the person can do or share with you that will show them they are still valued. For example, sharing a coffee and treat; going for a walk; some favourite music.

You can find more support for changes in behaviour visit: https://devoncarers.org.uk/wp-content/uploads/2020/11/Living-with-Dementia-booklet.pdf

The person I support follows me around the house. What can I do to make them feel safe?

You are right to consider that following (also called shadowing) is about security. As dementia progresses, the person’s abilities to make sense of their surroundings becomes more difficult. People who are close in their relationship become important as anchors in an increasingly unfamiliar world.

In the early stages of dementia, it may be possible for the carer to establish a routine as described above where the person with the dementia has a circle of familiar people to rely on. This takes the pressure off a single carer. Where Covid-19 guidance permits, look for day opportunities such as Memory Cafes that the person can attend on their own or you can attend together and some will organise transport visit: http://dmcc.org.uk/

If this has not happened, other people will need to be introduced gradually and sensitively so that the person’s identity, independence and dignity is not undermined. Could you employ a cleaner or gardener or someone with a shared interest that could take the person out (for example to the football, to National Trust properties) or ask friends and family to pop round regularly?

You have probably found that becoming irritated with the person does not work – you both end up unhappy. Consider things which will engage them and their time maybe that they can do on their own in the house or look at enjoying an activity together. Once the person is engaged or taking a nap, you can have some time. Be realistic, this is only going to be for a short time. Decide for yourself how to use this time and prioritise breaks for yourself. Just a walk round the garden or read one chapter of a book might be enough to reset your tolerance levels.

Share your feelings with a trusted friend or professional. Sometimes you just want to let off steam without judgement or advice. Be kind to yourself and remember all the good things you have done today, yesterday and every other time.

How can I keep the person I support safe while they walk around the village?

Walking together around your local area may help the person learn a safe route. Maybe a daily task such as fetching a paper or buying bread will keep the person to the familiar route. You could speak to people the person might see on their route and give them your contact number to phone if they are concerned.

Ask the person you support to check they have ID (their name, address and contact person at the very least) when they go out. Show them that you do this too and that it is quite normal to do so.

There are trackers that you can buy for the person to carry. If they do not return by the agreed time, you will be able to find them. Before buying a tracker, speak to your local Alzheimer’s Society worker or Devon Independent Living Centre https://www.independentlivingcentre.org.uk/ to find one that is suitable.

You can also download the Herbert Protocol https://www.devon-cornwall.police.uk/advice/missing-persons/information-needed-to-find-the-missing-herbert-protocol/

This is a form that you can record important details about the person, including where they are likely to be. It is information the emergency services will ask for if the person goes missing. It is better to do this in advance when you are not stressed.

How can I protect the person with dementia from becoming a victim of scams?

Scams are becoming increasingly sophisticated and it is difficult for most of us to tell what is real and what is not. They are coming in by phone, text and email – so it is more difficult to avoid them, so be aware.

Prevention is better than having to put things right after a successful scam. Convincing the person with the dementia that it is a scam can be difficult as they look so real. Empathy, for example sharing how you thought it looked real, may help someone to see you are not trying to take control from them.

The Alzheimer’s Society have good information: https://www.alzheimers.org.uk/blog/coronavirus-covid-19-scams-people-affected-dementia

Devon Carers has a webpage on scams and how to avoid them: https://devoncarers.org.uk/help-during-coronavirus-avoiding-scams/

Where can I find more information about dementia related organisations?

For more dementia organisations and helpful information visit our website: https://devoncarers.org.uk/information-and-advice/quick-help/i-care-for-someone-with/dementia/

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