My spouse has dementia: what help can I get?

What is dementia and how can it affect relationships?

Dementia is a term describing a number of progressive neurological disorders that impair cognitive function beyond what is expected with normal ageing. It can affect functions such as memory, reasoning, and the ability to perform daily activities. You can learn more about the different types of dementia and how it progresses in our guides to the different types of dementia and managing the stages of dementia.Eventually a person with dementia will struggle to perform basic daily tasks, and the condition can start to impact their communication, understanding and personality, which can of course have a big impact on their relationships with others. Over 70% of those with dementia are thought to be taken care of by either a single caregiver or by their spouse, and one 2019 study found caring for a loved one with dementia can lead to significant emotional and physical stress that can increase a caregiver’s risk of depression and anxiety, so it is important to manage your own health as a spousal caregiver. The same study also identified that taking steps to increase positive emotions helped to reduce anxiety and depression in subjects after six weeks, which led to better self-reported physical health and a more positive attitude toward caregiving. These steps included things like noticing and capitalising on positive events, practising gratitude and mindfulness, setting attainable goals, and performing acts of kindness. Maintaining your own wellbeing alongside the wellbeing of your spouse often involves thinking of new ways to enjoy each other’s company in this unexpected phase of life, which can help you to face the challenges ahead with confidence, trust, and a positive attitude. Some of the challenges you may need to navigate include things like:

• Helping with personal care activities, such as getting washed or putting on clothes each day 
• Taking over important household tasks like managing finances 
• Learning to practise patience and empathy during difficult moments, such as a memory loss situation or a misunderstanding
• Finding new ways to communicate when verbal communication starts to break down
• Managing medications on their behalf, and ensuring they remain pain-free

The specific challenges you come across will depend on their symptoms and the type of dementia they have. For this reason, it is incredibly important to consult a medical professional as soon as you notice any of the signs of dementia, such as memory loss, so a doctor can make a proper diagnosis and provide any treatment options to help. They will also provide further resources for those caring for a spouse with dementia, so do not delay speaking to them about this if you have any questions or concerns.

What practical steps must be considered when caring for a spouse with dementia? 

There is a lot to think about when someone is first diagnosed with dementia, and often the medical professional overseeing the person’s care will walk you both through the medical and care side of things, so you better understand the condition and what you can expect going forward. While their resources are helpful, it is also a good idea to do some research yourself to make sure you are covering all of the recommended practical steps to support your spouse during this time. Here are some things to consider during the early days of a dementia diagnosis: 

• Understand and learn about the specific type of dementia your spouse has so you can be prepared for the possible future symptoms.
• Put a Care Plan in place so your loved one, yourself, any other family members and professional carers can be on the same page with the care required.
• Have a discussion with your loved one about important things, even if they are still a long way off. This could be conversations about who they would like to look after them, how involved they would like certain people to be, where they would like to be cared for when they can no longer look after themselves, and so on. 
• Put legal documents in place to protect the interests of your spouse, such as a Power of Attorney, and a Living Will. 
• Research options for financial support, such as getting a Carer’s Assessment to see what your local council could provide, and carer benefits to help bring in money while you focus on caring for your loved one.
• Research options for professional care and respite care, so you know who to contact if you ever need a break from caring duties, or if your loved one’s condition starts to worsen faster than you anticipated. 

How can I care for a spouse with dementia at home?

Caring for a spouse with dementia at home is both possible and recommended in many cases. A person may prefer to be moved to a care home or nursing home to avoid being looked after by family members, but if not (and it is deemed safe) then staying in the familiarity and comfort of their own home with someone they trust to look out for them is often the best choice to avoid the unnecessary upheaval of moving. If you are planning to take on some or all of the caring duties for your spouse, you may need to look into:

Medical support 

Liaising with medical professionals may become a prominent part of your week, as there may be a lot of appointments to attend or medical visitors to organise. Keeping a dedicated calendar for your spouse’s care is helpful so you don’t lose track of anything important, and in the early stages it can be useful to keep your spouse involved in this to maintain their independence and help them to feel in control of their own health. Your spouse may also start to experience additional symptoms as their condition progresses, or side effects from their medication, so keeping an eye on these can help to monitor their health and address anything concerning before it becomes a problem. Remember, if you haven’t already, register with your GP as a carer so they can provide additional support and resources. 

Medication management

There is no cure for dementia, but medical professionals often prescribe certain medications to help manage some of the symptoms associated with dementia, such as medications for depression, to aid sleep, or to manage pain. As memory loss is a key symptom of dementia, it is not always wise to leave them in charge of their own medication in case of missed doses, double doses, or other forms of mismanagement, so you may need to start managing this on their behalf. Again, creating an organisation system like a calendar can help to keep track of any medications your loved one is taking, and their possible side effects so you can report back to their doctor and adjust doses if need be. 

Daily routine management

For a person with dementia, having a predictable daily or weekly routine can be comforting as it allows them to know what is coming next, and avoid anxiety or feelings of overwhelm. Simple things like a daily walk for exercise, some dementia-friendly games and activities, cooking dinner together and other engaging activities can help to keep your spouse stimulated and improve their wellbeing. This can also be rewarding to do together as a couple, to continue spending quality time together and enjoying each other’s company as dementia progresses. You can find some great activities for older adults with dementia in our guide to great games for older adults with dementia.

Home adaptations 

A person with dementia will often experience physical symptoms, so you may need to consider making some adaptations to your home in order to make it a safe place for your spouse to move around independently or do things on their own. For example, installing grab rails so they can go to the bathroom on their own without risk of falling, or getting adaptive utensils for them to use in the kitchen if they have dexterity issues. You may not notice if a loved one is struggling within your home as you have lived there for so long, which is why organising a Care Needs Assessment can be helpful. However, you can also pay attention yourself and notice the areas of the home that could be made more streamlined for your spouse, and most importantly, safer. Studies have found those with severe dementia may experience issues with balance, gait, coordination and posture, which can become a safety risk, so make home adaptations as early as possible to avoid any accidents or injuries, and allow your spouse time to get used to the changes. You can read more in our guide to home adaptations for disabled older people.

How can I handle communication difficulties in a relationship?

Communication can be one of the biggest challenges couples face when one person has dementia, as issues in this area can be a primary symptom of the condition. This might look like difficulties finding the right words or finishing a sentence, placing words in the wrong order, or reverting to non-verbal cues or gestures to communicate instead of words. Learning to understand how they attempt to communicate is important for addressing any pain or issues they may have, but it can also help to maintain positive wellbeing for both of you, allowing you to remain close even when words fail. Some of the ways you can adapt to other forms of communicating with your spouse include: 

• Tuning in to their non-verbal cues 
• Making sure they can clearly see and hear you when speaking 
• Asking direct questions with yes or no answers 
• Using short, simple sentences 
• Using objects to help them understand, such as showing them a bowl and spoon to suggest eating breakfast, or showing them a picture of someone you are describing 
• Doing more communication on their ‘good’ days when they are feeling well and happy, and giving them space on ‘bad’ days
• Not rushing communication, having patience, and providing ample time for them to process and answer
• Repeating what the person has said in different words to confirm if you are understanding them correctly 
• Remembering to involve them in conversations with others and talking to them, not about them, when they are in the room 

What other support options are available for my spouse and I?

Often people feel caught in a cycle of caring, and wrongly assuming that they should be solely responsible for their spouse if they receive a dementia diagnosis, with research finding family caregivers of those with dementia tend to experience social isolation and physical health deterioration as a result. While spousal support is incredibly important for older adults with dementia, taking care of yourself is also vital so you can show up for caregiving duties as the best, most positive version of yourself. For this reason, utilising local support, medical help, and other resources to get some advice and regular rest can help you to maintain your own wellbeing. It can be difficult to know what services to choose for your specific situation, but some of the support options you could consider include: 

• • Home care – Whether organised through your local council or a private care agency, even just a few hours a week of care can make a big difference for both you and your loved one, by ensuring there is always a professional checking in on everything and giving you both a regular break from the demands of dementia care. If you are still working or have other responsibilities, having regular home care can help you to manage all aspects of life. Research finds 57% of people who stopped working or reduced their work hours to care for a loved one said they did so due to the stress of juggling both, so home care can give you back the choice. If you are interested in this, check what your local council could offer by organising a free Carer’s Assessment, or reach out to a private home care agency like Home Instead for more flexible options and personalised, specialist dementia care.   
  • Local support groups – Dementiasupport groups can help the person with dementia, but they can also support families or caregivers who also feel the emotional toll of seeing their loved one’s health decline. There are usually dementia services in most local areas, but if you need help with this, approach your GP who will be able to refer you or recommend some support options.  
  • Respite services – Respite care can be a lifeline for those caring for someone with dementia, particularly in the later stages of the condition when care can seem all-consuming. You can use respite care to cover a holiday period, take over if you are ill, or simply provide a regular break to recharge your batteries. This service is designed for people who need a break from caregiving for any reason, but it is helpful to research some options in advance in case you need respite care unexpectedly due to illness or an emergency. You can learn more in our guide to what respite care is.

• GP support – If they don’t already know, you should tell your GP if you are caring for your spouse with dementia so they can support you through this. Doctors may have access to services and resources not available elsewhere, so speak to them about the challenges you are facing and see if they can help. You can also register as a carer, which could qualify you for a number of support opportunities and benefits.

• • Financial support – Remember to check what financial benefits you may be entitled to when caring for your spouse. You can find more information on carer benefits in our guide to financial benefits for pensioners.
• Charities – Certain dementia charities offer services to help those caring for a loved one with dementia, and these can be utilised if you are caring for a spouse. From advice phone lines and support groups, to financial assistance and free respite services, charities can offer a lot to carers, so it is worth researching these options. Take a look at organisations like Dementia UK, Alzheimer’s Society and Age UK. 

Remember, self care is not only helpful for you as a caregiver, but it can improve the caregiving experience for your spouse too. Studies find 27% of unpaid carers reportedly have ‘bad’ or ‘very bad’ mental health, so finding time to prioritise your own personal health, your hobbies, and your social connections will help you to maintain a positive outlook. When you take regular breaks and maintain a schedule of things you enjoy in life, you can improve your own wellbeing and provide better quality care as a result; instead of feeling like you are simply reacting to your spouse’s symptoms every day, you can become more organised with care duties, attentive to the needs and wants of your spouse, and proactive when it comes to their symptoms. 

How can I plan for the future when my spouse has dementia?

The future isn’t always certain for someone with dementia, and though doctors can often give predictions on the progression of this condition, everyone will experience their own unique combination of symptoms that will progress at varying rates. Planning for the future is a key part of dementia care, to help the person make choices about their future care and end-of-life care while they are still able to do so. When having the discussion with your loved one about long-term care options, you may want to ask them about details such as:

• Where they would like their care to take place
• Where they would like their end-of-life care to take place 
• Who they would like to be involved in their care (for example, they may want their children to be involved up until a certain point, but not after) 
• What routines or activities they would like to carry out in future
• How involved they would like their spouse to be (for example, if they would prefer a professional carer take on personal care duties or not)

While making plans for the future, it may also help to involve the wider family, such as siblings, adult children, or close family friends who may be able to help with care, or do regular visits to keep them company and give you a break. They may also need to be involved in any legal decisions such as creating a Power of Attorney or a Living Will.

How can home help support my spouse and I?

For most people, one of the top concerns is where they would like their care to take place in the future. This could be in a care home, nursing home, assisted living facility, or at home. Your spouse may have already decided which location they would prefer, but if not, they may have questions for the various organisations. You could help them by asking questions like:

• What are the benefits of a care home vs home care?
• If my spouse chooses to be moved to a care home, at what stage should this happen?
• Can end-of-life care take place at home? 
• How is pain managed if dementia care takes place at home? 
• How much is a place in a care home?
• How much is home care? 
• Would live-in care be an option for my spouse? 
• How are Home Instead Care Professionals trained and what qualifications do they have?

If you or your spouse decide to receive care in your own home, there are plenty of options available to help, such as support from your local council, or through private home care options. At Home Instead, our specialist dementia care can make sure you and your spouse can remain at home where you both belong, living together as independently as possible. Our Care Professionals are trained to provide a high standard of dementia-focused care through our unique training programme created by ageing experts, dementia specialists and key medical practitioners from around the world. This training is accredited by City & Guilds, so you can always feel confident that your spouse is in safe hands. We’re an award-winning home care provider and part of a worldwide organisation devoted to providing the highest-quality relationship-led care for older people in their own homes. Arranging care for yourself or your loved one shouldn’t be stressful, so whatever questions you would like answered, feel free to reach out to the Home Instead team to discuss your needs.