How to support someone with dementia: what help can I get?

Dear Sarah,

Your feelings are completely valid and you’re not a terrible daughter for wondering if your mother should go into a care home. 70% of care home residents have dementia in the UK.² Caring for a parent with any form of dementia is one of life’s greatest challenges. The fact that you’re concerned shows how much you love your mother.

If you haven’t already, contact your local social services for a carer’s assessment. We’ve covered how to find your local authority in this guide so scroll down for more information. They can arrange support services, including community nurses or day centres to give you peace of mind that your mother isn’t alone. Alzheimer’s Society offers excellent resources and local support groups where you can meet other family members facing similar situations.

You could consider hiring an in-home caregiver to support your mother or explore memory care facilities if her needs exceed what can be safely managed at home. A memory care facility isn’t giving up – it’s ensuring she receives specialist care from staff trained in managing dementia.

Maintaining your mental health is crucial. You can’t pour from an empty cup. Seek emotional support through counselling or an online support group where you can find people experiencing the same situation as you. Many adult children find professional help invaluable during this journey. Asking for help is a sign of strength, not weakness.

Dear Michael,

Your feelings are entirely legitimate and you’re experiencing what many spousal carers face. The grief you describe is real – it’s called anticipatory grief³ and it’s a natural part of the dementia journey.

Young-onset dementia is a condition that affects close to 42,000 people in the UK who are under the age of 65.⁴

Get in touch with Alzheimer’s Society’s special young-onset dementia service. They have support groups made for people of your wife’s age living with dementia. They understand the unique problems you have. A lot of these groups now meet online, so help is available no matter where you live.

I would also recommend contacting your GP immediately to request a carer’s assessment through social services. You’re entitled to support, including Respite Care and potentially day trips or day centres for your wife. Alzheimer’s Society provides specific support for carers⁵, including support groups where you can talk to other carers who understand your situation. As your wife’s primary caregiver, you may also be entitled to financial support such as Carer’s Allowance, which can help with the exhaustion of working alongside caring for your wife.

Consider arranging power of attorney and other legal documents now while your wife can still participate in decisions. A social worker can help coordinate support services and discuss options like memory care facilities when appropriate.

Your emotional needs matter too. Consider joining a support group so you can talk to other spousal carers experiencing the same challenges as you. The family caregiver alliance offers resources specifically for maintaining positive relationships during dementia progression.

If you can, also consider Respite Care. A professionally trained Carer can visit your home and perform some of the tasks that you might be currently doing for your wife. It’ll give you a chance to step away from your caregiving duties and recharge.

Remember, using support services doesn’t mean you’re failing – it means you’re being responsible by ensuring both of you get the best care possible.

Dear Patricia,

Your situation sounds heartbreaking and your feelings are completely understandable. Difficult behaviours like aggression are symptoms of Alzheimer’s disease, not reflections of your husband’s true character. The man who made you promise not to put him in a home couldn’t foresee how the disease would progress.

I would recommend immediately contacting your GP about the aggressive episodes – there may be medications or strategies to help. Request an urgent carer’s assessment and discuss safety concerns with a social worker. Your wellbeing matters too and you can’t provide good care if you’re unsafe or exhausted.

Despite the promise you made to your husband, you are the partner with the decision-making capability now and you must act in both your best interests. A memory care facility with specialised staff trained in dementia behaviours may be the safest option. Alternatively, you could consider an at-home care provider where Carers visit him at home to meet his needs. GOV.UK statistics show that the number of people with dementia over 65 has increased faster than the rate of care home beds available for people with dementia.⁶ That means it might become more common for people to receive Dementia Care at Home and providers, of which we are one, are equipped to deal with many forms of dementia with our Home Care & Live-in Care services.

Visiting Care may also give you the time you need to focus on your own health and pursue your hobbies. Choosing professional care when you can no longer safely provide it yourself isn’t breaking a promise – it’s a loving decisions that ensures your husband receives appropriate care while preserving your health. You’ve given many years of devoted care; now it’s time to ensure both of you are safe and supported.

Dear Mark,

Family tensions about care are sadly very common. We know it’s hard to face both the daily problems you’re coping with plus the feelings that come with them. Let’s try to handle one at a time.

First, set up a family meeting to talk about what your father needs for his care. You can do this on a video call if needed. Bring the right information with you. This means you should know about his daily care needs, the costs involved and what the doctors say about his health in the future. Often, it’s helpful to have a care assessment to support this. Care providers, like Alina Homecare, offer free assessments to guide you in this way. You could then offer clear ideas on how your siblings can help. This could be financially, visiting your father more often or helping to find outside help.

Get in touch with your local authority to set up a carer’s assessment and ask if they have family mediation services. A lot of places give free help through mediation for families who have problems with care. Write down everything about how your father is looked after and what you need too.

If your siblings don’t want to help, try to focus on what you can do. You can look into care options like Respite Care, adult day centres, or other Home Care services. These services offer extra help and enable you to take time for yourself. You may be able to get Carer’s Allowance as extra support and your father may be entitled to Attendance Allowance. This money can help you pay for more support or a professional in-home caregiver.

Think about joining a support group for male carers. There are more of these groups now and they can provide advice and emotional support. Taking care of someone should not rest with just one person but at time, you may feel like it does. To look after your own wellbeing, make sure to use any support services that are available to you.

Dear Emma,

You’re in one of the toughest caregiving roles, known as the “sandwich generation”. It’s normal to feel like you’re being pulled in many ways at once. A lot of people feel the same way you do.

First, keep in mind that good care doesn’t mean you need to do all the work by yourself. You should get in touch with social services right away to ask for a care assessment for your grandmother. Tell them about your life as a family carer, especially that you have young children. They may give your family top priority for support services.

Your can look into adult day centres for your grandmother. The centres could give her a place to have social time and take part in a variety of activities. At the same time, you get time to spend with your children. Many places also have activities for the young and old to do things together – this could be good for your children, your grandmother and you.

It sounds like your children are at an age where they could help you with your grandmother’s care. They could take part in easy things, like looking at old photo albums with her or preparing a drink for her. This may help them know more about what’s going on and feel like they’re part of it which may help them to not feel left out or upset.

Consider Respite Care when you need a regular break, even if it’s only for a few hours each week. Use this time to spend with your children. Don’t worry about household chores during this time, just focus on quality family moments together. It’s important that your children feel they’re still a top priority.

Speak to other people who are also “sandwich generation” carers by joining online support groups. You may find helpful tips from other people who face the same problems you do.

Remember, you can’t help others if you feel drained. If you take care of yourself first, then you can better look after the people around you.

Dear Margaret,

Your safety comes before anything else. This isn’t something to argue about. When someone with dementia acts out of character, it’s a part of the illness, not something they mean to do. But you shouldn’t have to hurt because of it.

Get in touch with your husband’s GP right away to let them know about the aggressive episodes. The doctor may have medication or other ways to help handle these behaviours. Lewy body dementia can make people see things that aren’t there and feel confused, which can lead to anger. A doctor may be able to help make things better.

For his safety and your own, don’t try to help him with Personal Care if that’s what’s causing your husband to get upset. Step away and give him some space. Wait a while, then try again – or you may want to consider hiring a professional Carer who’s trained in managing these symptoms of dementia.

In a care home, memory care units have trained staff who know how to work with people who may get angry or upset. They’re trained to keep everyone safe. If you decide to move him there, you’re not leaving him behind; you’re making sure both of you get the right care. After being married for 40 years, you’ve done more than most people get to do.

Dear Robert,

Your situation needs immediate help from social services. You should urgently get in touch with them again. Ensure you tell them you’re a disabled spousal carer. This can help speed up your assessment with the Care Act 2014. Ask for a joint assessment for you and your wife, Jenny.

Contact your local Carers Centre right away. Many of them help disabled carers and can speak to social services for you. Tell them this is a crisis and be sure to say there are safety concerns.

Look into Direct Payments – with this, you can get money to set up your own care. It might be more flexible than waiting for what the council offers, and you could even hire carers who can help both you and your wife at the same time.

For immediate help, contact Age UK for emergency services. Ask your GP to send Jenny to the memory clinic for a check up. Get in touch with disability charities for help with equipment like grab rails and monitoring devices. These things can make life easier. Look into helpful tools like movement sensors to help with her wandering at night.

Regarding money, both of you may be eligible for financial support. You both may be entitled to Attendance Allowance or Personal Independence Payment and you may also be entitled to Carer’s Allowance because you care for Jenny.

Don’t think you’re not needed – love is about more than just taking care of someone’s body! Being there for Jenny and standing up for her needs matters so much. You’re doing a great job during a tough time and what you do means a lot.

Dear Helen,

As a healthcare professional, you know how important it is to deal with this problem before it can harm your job or your registration. Your employer should have policies for family carers. You should ask to meet with HR and talk about flexible working.

Get in touch with ACAS (Advisory, Conciliation and Arbitration Service) to get free advice about your rights at work if you’re a family caregiver. You may have the right to flexible working hours, carer’s leave (though often unpaid), time off for emergencies and possible career break options.

For immediate help with your mum, you can get in touch with your local council if you need Emergency Respite Care. Look into NHS Continuing Healthcare – your mum might get care that’s fully paid for. You could also think about having a Live-in Carer who works times that fit around your schedule.

Join online support groups for people who work and care for someone at the same time, especially as you work in healthcare. A lot of nurses deal with the same problems and often share tips that help with daily issues.

When it comes to costs, you can look into Deferred Payment Agreements. With this, the council will pay the care home fees up front and will get the money back later from your mum’s estate. This can help make residential care possible for a short time.

Your job is important, not just for the money but also because there’s a big need for skilled nurses. Taking care of yourself and your job is not selfish – it ensures you can keep helping your mum for a long time.

Dear Giuseppe,

Language regression is often seen in people with dementia. As the condition worsens, they can start to use their first language more often. This is not unusual or rare and there are services available that can help with this.

Get in touch with the NHS’ interpretation services right away. The law says they must give you interpreters for medical appointments. Many places have people who help with healthcare for Italian-speaking patients, especially for older people.

Look for support groups that match your culture; in London, you can find several Italian community services. They have dementia support groups spoken in Italian that you can get in touch with.

When Rosa says she wants to “go home”, she may be saying she needs comfort and a feeling of what she knows best, not that she really wants to travel. To help her feel more comfortable, make sure she’s around things she knows from Italy. You could play Italian music or radio stations, show her photos of her childhood in Italy, find Italian television shows and provide her with traditional Italian foods. Consider hiring a Care Assistant who can speak Italian. You can find one by looking for agencies that have experience with multicultural care.

Get in touch with your local council’s adult services. They should help you by offering translation services. In many places, there are now special programs for older people from different cultures who have dementia. These programs aim to give the right support.

Dear David,

Teenagers can find it hard to deal with dementia in the family as it can make them feel confused about who their loved one is and if things will ever be the same again. Your children are sad about the grandfather they remember. At the same time, they’re trying to get used to how he’s changing now.

Start with learning more about dementia. For information, reach out to Alzheimer’s Society or Dementia UK. They’ll have many helpful resources for kids and young people to explain what dementia is in a way that’s easy to understand. They also provide information about family history and whether dementia can be passed down. Most types of dementia are not directly passed from parent to child, so this might help your children feel better.

Create opportunities for positive interactions, such as:

• Looking at photo albums together: your father may remember old memories and tell your children about his experiences
• Playing music from his childhood that might bring back good memories or positive responses
• Involving your children in easy activities with their grandfather, like gardening, cooking or walking
• Sharing happy stories about their grandfather before he got dementia

Talk to them about their worries. Let them know it’s safe to talk about their feelings with you. This might also help them to explain the situation to their friends, so your son can feel comfortable inviting them over. For example, they could say, “Grandpa has dementia and that means his memory isn’t as good and he often gets confused, but he’s still the same person who loves us.” Many teenagers will find that their friends understand this more than they may think.

Consider family counselling to help everyone deal with grief and the changes happening in the home. Your local CAMHS (Child & Adolescent Mental Health Services) can give support to teenagers who are facing illness in the family, which could be beneficial for their mental health.

Most importantly, let your children keep up with what they usually do and stay close to their friends. They need time and space where they feel like normal teenagers, not always having to be carers or family supporters.

The fact that your children once loved their grandfather a lot shows they can feel close to him again. With your help and patience, they can find ways to connect with him.