Dementia respite care
Considerations for dementia respite care
Caring for someone with dementia is undoubtedly challenging, especially if you are a family member providing care alongside other life responsibilities. As a caregiver, you may be feeling the effects of carer burnout and considering what respite care options are available to you and your loved one. While it can feel overwhelming to begin the process of looking into dementia-specific respite care, there are many benefits to this arrangement for both of you.
Here, we are examining how dementia respite care works, how it differs from other types of respite care, any additional aspects of care you should consider when planning respite care for dementia or Alzheimer’s patients, and whether or not respite is free for dementia carers.
At Home Instead, our aim is to help people age positively and in place by bringing expert care to their home. For nearly 20 years, we have been providing the highest standard of care, and creating industry-leading training programmes for our Care Professionals that are accredited by nursing and medical professionals. Today, we are the world’s largest global home care network, supporting over 100,000 older adults with personalised, tailored care at home. Whatever questions you have about respite care for people with dementia, we can help.
What is dementia respite care?
Dementia respite care is a type of temporary care given to someone with dementia, in order to relieve their regular caregiver of duties for a period of time. While respite care is usually easy to arrange for family caregivers, a certain type of specialised support is often needed in the case of people living with dementia. This is because their care typically involves medication and an understanding of their cognitive abilities and mental health in order to avoid disrupting their regular routine.
It is normal for caregivers to feel reluctant to take a break from their usual duties because their loved one will become anxious, upset or even distraught at their absence and the presence of a stranger. However, respite care is equally as important for carers of those with dementia as it is for any other type of carer.
Just like other carers, those looking after a person with dementia will require time off to do things like maintain their home life, run errands, go on holiday, meet friends, and more. Respite care can benefit the person with dementia (more on this below), but moreover it benefits the caregiver by giving them a break if they are struggling to cope with care needs as their loved one’s condition advances – this helps boost their physical and mental health.
Caregiver burnout is not just an inconvenience, it is a recognised state of physical, emotional and mental exhaustion commonly experienced by both professional carers and family caregivers, so it is important to recognise when it is time to seek dementia respite care for your loved one and for yourself. You may find our guide on this useful: Carer’s Burnout: Knowing You Need Respite
How is it different from regular respite care?
Typical respite care can often be easily arranged as the person receiving care can understand the need for respite, voice any concerns they have so you can alleviate them, and can enjoy the change of pace or alternative activities offered to them by a respite carer. On the other hand, for those with dementia respite care can be more difficult to arrange if the person requiring care does not understand why their regular carer needs a break, becomes anxious and upset at the thought of change, or feels scared of the new face in their home during the respite period.
For these reasons, specialised dementia care can help to ensure the appropriately trained carers are present, and the transition to a new caregiver is as seamless and compassionate as possible for them. Dementia respite care professionals have an understanding of the different stages of dementia, meaning they can be more vigilant if the person tends to wander off, experiences sundowning, or requires consistency with specific routines.
Dementia respite care providers undergo specialised training in understanding and managing the unique challenges associated with dementia. They are trained to handle behaviours such as agitation, wandering and confusion, which are common among people with dementia. They can also provide structured activities tailored to the cognitive abilities and interests of the individual.
Ultimately, dementia respite carers aim to enhance the wellbeing of both the person with dementia and their caregiver by covering the gap in care, while also alleviating any change and confusion for the older person as much as possible.
What type of respite care is needed for someone with dementia?
As above, dementia care is more specialised than regular respite care, and there are several types available. These include:
- At-home respite care – Home care can be organised by your local council or paid for independently, and this means a respite carer with dementia training will take over caring duties within the person’s own home for a set period of time, such as one week so you can go on holiday, or one day a week as an ongoing day off for the regular carer. You may find more helpful information in our guide:Caring For Someone With Dementia At Home
- Temporary care home stays – A temporary stay in a care home or nursing home can be arranged for those with dementia, and although this can sometimes be difficult if the person relies on their own environment and belongings, it means the regular caregiver can take a break safe in the knowledge that their loved one is in a facility where they will be properly looked after.
- Sitting services – Charities such as Age UK offer sitting services, which means a trained volunteer can sit with the person for several hours to provide necessary care and companionship, giving regular caregivers a break. For people with dementia who need to remain in their own home, this can be a helpful type of short-term respite.
- Day care centres – These are often run by local councils or charities, providing opportunities for older adults to socialise with others and take part in activities during the day while their regular carers take a break. Day care centres can be helpful as a regular break for those caring for someone with dementia.
- Emergency dementia respite care – Sometimes carers will have emergency situations come up or things they cannot get out of. Planning ahead by considering dementia respite care in your Care Plan can be useful if you ever need someone to take over quickly and look after your loved one. You can read more about this in our guide: Building A Care Plan For A Dementia Patient At Home
Although any of the above options can be considered for your loved one (based on your knowledge of how they would respond to each), due to the confusion and change that moving to a new place can cause for some people with dementia, many families decide to arrange respite care at home for their loved one to alleviate some of the stress involved.
What else should I think about when organising dementia respite care?
There are some other things to consider when arranging dementia respite care:
- Look for person-centred care that respects the needs and wishes of your loved one, so they still feel listened to while you are away. Even for just a short while, their needs should be considered throughout the respite period.
- Find a respite carer trained specifically in dementia care to ensure they have all the skills required to look after your loved one. At Home Instead, our innovative dementia training has been awarded The Princess Royal Training Award, and our City & Guilds accredited programme provides our Care Professionals with the skills and knowledge needed for high-quality dementia care.
- If you can, do a handover with the replacement carer to discuss your loved one’s needs. These may include basic things like foods they like to eat and activities they enjoy, or it could be specific to their dementia diagnosis such as triggers that cause behavioural issues, or areas of the home they struggle to navigate. Explaining what your loved one can and can’t do will help ensure their care and routine is consistent.
- Think about how long your loved one might handle respite care for. While short-term respite care may seem like a good idea to minimise disruption, your loved one may not have enough time to settle into a new routine, which could mean a longer respite period is more beneficial. This is a difficult judgement call to make. You may find more helpful information in our article: How Long Can Respite Care Last?
What are the benefits of respite care for those with dementia and their families?
Respite care offers many invaluable benefits, both for the person living with dementia and for their families and caregivers.
For those with a dementia condition, the benefits may include:
- Receiving specialised dementia care from a professional with dementia training
- Gaining new types of cognitive stimulation through structured activities and new hobbies, which can enhance wellbeing
- Staying in a familiar, comfortable environment (if receiving care at home) – a 2013 study found those living with dementia at home experienced higher activity levels, quality of life, and felt more socially connected than those living in a care home
- Accessing respite care through several flexible options, such as at home, through a sitting service, or in a day care centre
- Maintaining a regular and predictable routine – studies show familiar surroundings can improve quality of life of those with dementia
- Having constant companionship at home to manage feelings of loneliness or worry
- Experiencing relief from any guilt they are feeling about receiving care from family members – studies show care receivers often feel guilty about receiving more care than they can give in return, and respite care can provide a break from this
- Opportunities to test out alternative types of care to see if something else could be a better fit – for example, if they have never tried attending a day care centre before they may find this unexpectedly enjoyable
- Opportunities to spend quality time with loved ones without them being ‘on duty’ to provide care
For caregivers, the benefits of respite care may include:
- A much-needed break from caregiver burnout, which can minimise compassion fatigue (feeling like you lack empathy for the person you are caring for) – this is a common symptom of caregiver burnout
- Peace of mind knowing your loved one is receiving specialised care in a safe environment
- The chance to manage other life responsibilities outside of caring for a loved one
- Opportunities to maintain other work responsibilities – 57% of people who stopped working or reduced their hours at work to care for someone said they did this due to the stress of juggling both
- Opportunities to prioritise your wellbeing to continue providing the best care for your loved one – research shows family caregivers of people with dementia tend to experience social isolation and physical health deterioration
- Opportunities to attend social events or go on family holidays without worry
- Opportunities to renew your energy through the chance to engage in self-care activities and hobbies
- Addressing your mental health – 27% of unpaid carers are reported to have ‘bad’ or ‘very bad’ mental health, and for those caring for 50+ hours per week, or for 10+ years, this rises to 31%
- Opportunities to spend time with a loved one with dementia in a non-care capacity, to maintain your familial relationship
What are the disadvantages of respite care?
There are few disadvantages to dementia respite care, as this is considered a necessary service for anyone caring for a loved one with dementia on a regular basis. The person with dementia may be negatively impacted by the arrangement the most, as the transition to a new routine or environment could cause confusion and anxiety, leading to increased agitation or distress. They may resist change, which can make respite care more difficult for the caregiver who is trying to take a break.
For caregivers, the guilt or worry about leaving their loved ones in unfamiliar surroundings or with a stranger could impact the enjoyment of their break, potentially undermining the intended respite benefits. Although it is normal to worry that your loved one is upset or confused by your absence, you should try to fully enjoy your time away if you can, safe in the knowledge that they are being properly cared for.
For both parties, accessing high-quality dementia respite care may pose financial challenges or availability issues, so this can sometimes be a disadvantage too.
Is respite care free for dementia carers?
Your loved one’s eligibility for dementia respite care will depend on their needs and financial situation. If you are worried about being able to afford respite care (or that your loved one cannot afford this), take a look at the options for financial assistance or subsidised care depending on your situation. You may find more helpful information in our guide: Who Pays For Respite Care?
To find out if you are eligible to receive dementia respite care, you should start by reaching out to your local council to organise a Care Needs Assessment if you haven’t already, and ask about the available respite options and financial support for your loved one. You may find more useful information in our articles: How Much Does Respite Care Cost?
If you haven’t already, you should also speak to them about receiving Carer’s Allowance, which could provide you with a weekly payment if you are caring for a loved one for at least 35 hours per week. Check the GOV.UK website for more information to see if you qualify.
How do you arrange respite care for someone living with dementia?
If you are looking after a loved one with dementia and you believe you need to arrange respite care – whether to manage symptoms of burnout, attend an important event, go on holiday, or something else – it can be hard to let go when you have managed your loved one’s care for so long. Deciding to find respite care can be a difficult decision to make, but once you have made it, it is relatively easy to organise provided there are dementia care specialists available in your area.
- Assess the needs of your loved one and the level of care required – a Care Needs Assessment from the local council can do this for you, and allow you to discuss future respite care needs in advance as they can make recommendations on things like available services, funding and other forms of support.
- Decide which type of respite care is best for your loved one. For example, if they experience agitation and distress, home respite care may be the answer, or if you are particularly worried about them becoming confused and wandering, a secure care home could be the best option. Or if you only need a few hours of respite each week, a day care centre could cover their care while you recharge.
- Find out what options are available in your area by contacting your local council to discuss your needs. You could also research private home care providers if you are looking to self-fund, and find the ones you believe are best qualified and trained to provide dementia services.
- Find out how much it would cost to organise the level of respite care you need – you may find more information on this in our article: How Much Does Respite Care Cost?
- Prepare for the transition ahead of time by involving your loved one in the discussion and decisions on the best type of respite care. Discuss this with them, and help them understand why it is a necessary arrangement. You can also introduce them to the replacement caregiver so they feel comfortable accepting their help.
- List out any behavioural concerns or specifics of their care that would be helpful for a respite carer to know. Although the respite carer should be trained in dementia care and well-versed in dealing with scenarios that may arise, it is always helpful to give as much detail as possible to ensure continuity of care.
- If you can, keep in touch with the replacement carer during the respite period to address any issues or concerns. If you need a full break from caring or are going on holiday and cannot receive messages from the respite carer, appoint someone else in your place who can answer questions if needed.
Deciding to enlist the help of a dementia respite carer can feel overwhelming, but at Home Instead we can help to support you in setting up the best possible respite care arrangement that works for both you and your loved one. If you have any questions about how this might work, please feel free to reach out to the Home Instead team. Our Care Professionals are highly trained to deliver specialised dementia respite care, so no matter what you need, we can provide a tailored service that suits you.
Home Instead is 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.