Finding the right care for a parent or relative diagnosed with Dementia will be dependent on so many things, not least the type of dementia and the particular stage they may be at. Dementia care must also include looking after their spouse or partner who may be doing the lions share of the caring.
Hopefully your parent or relative will be able to remain living well at home for many years, albeit with increasing levels of support. However, eventually you may find that your relative can no longer be cared for at home, and needs specialist dementia care and support best provided in a care home. In this guide to dementia care options we look at the services that you might be able to access at home, as well as care homes with dementia services.
There are 4 things however we would strongly recommend you consider, particularly whilst your parent is cared for at home:
- Encourage your parent to set up a power of attorney
- Find local expert support from Admiral Nurses and other charities/organisations
- Find local dementia-friendly activities and groups
- Consider additional help from expert home care providers and live-in carers
Dementia care at home
Caring for someone with dementia at home is about so much more than care, and not just for them. Those closest providing care and support also need looking after.
In the early stages many people are able to continue to enjoy life much as they have done before their dementia diagnosis. But as symptoms get worse you may find your relative becoming more anxious and scared at not being able to remember things, follow conversations or concentrate. There may well be other behaviours which can be very distressing for everyone.
Much of the advice is around keeping things in the home calm, consistent and simple – to try and reduce or at least mitigate the agitation and confusion. There is a great deal of excellent help and advice at Dementia UK. Some other key areas you may wish to know more about include:
Help with eating – top tips for helping someone to eat more
Help with sleeping – our comprehensive article on how to help someone living with dementia get a better night’s sleep will steer you in the right direction.
At risk of going missing – The Herbert protocol is a very useful policy and process adopted by many police forces
Making a home dementia friendly there are many things you can do around the home
Help with dementia care from Admiral Nurses
A brilliant resource provided by Dementia UK, Admiral Nurses are registered nurses and experts in dementia care who work in the community, care homes and hospices.
They give practical, clinical and emotional support to families living with dementia to improve their quality of life and help them cope.
To talk to an Admiral Nurse, call Admiral Nursing Direct on 0800 888 6678. The helpline is open seven days a week from 9am to 5pm; also from 6pm to 9pm on Wednesday and Thursday.
The helpline is a free service for carers, people with dementia, and health and social care professionals.
Keeping active living with Dementia
There are lots of local support groups and activities for people living with dementia. From “memory cafes” to dementia friendly film screenings and theatre productions, singing groups, walking groups and many more. Day care centres.
There are several dementia charities that can offer excellent advice and support. The leading dementia charity is the Alzheimer’s Society. Its website contains essential information on Dementia and Alzheimer’s disease, including how to live well with the disease and how to find help near you.
Dementia UK is a national charity that aims to improve the quality of life for people with dementia. It offers advice and support to families who are living with dementia through its Admiral Nurses, who are registered nurses and dementia experts.
Dementia UK and its Admiral Nurses also provide training for professionals who work with people with dementia.
If you are looking after someone with dementia, it’s important that you know how to get help and support for yourself as well.
The Dementia Carer is a good place to start looking for information and advice on how to get help and support, and even a break from caring.
Social media for people with Dementia and their carers
Online forums are a great way to share your experiences of caring for someone with dementia, as well as reading what others are going through. If there’s something you are struggling with, the chances are that someone else has had the same experience.
Talking Point is the Alzheimer’s Society’s forum. It has people with dementia sharing their information and advice, and supporting each other.
Holidays and Dementia respite care
Caring for someone living with dementia is exhausting mentally and physically so respite care is vital. Whether that be regular time away during the week, or longer breaks on holiday, there are many options, for both the carer and the person with dementia.
Care homes can provide respite care breaks. You could also find paid-for care in the home to come and take over.
Activities for people with dementia and keeping positive
Keeping people with dementia active and meeting others can have very positive effects in the management of their condition.
One great way to meet others is via local Dementia “memory cafes”. These drop-in centres are run by volunteers and allow people with dementia and their carers to find advice and support from others who share the experience.
Check out Dementia Connect for information about the cafes and other local activities. If you want to do something more active like going for days out and perhaps even take a short break but worried about managing the person with dementia’s needs there are organisations to help.
Dementia Adventure offers outings and short breaks, such as barge sailing and woodland walks, designed for people living with dementia and their carers to enjoy together.
Home care and live-in care for Dementia
If you find that your relative needs more consistent help and support at home from paid carers there are homecare providers and agencies that will be able to help you find the right person/people, whether that be day care or live-in Dementia care.
Dementia care homes
When should someone living with dementia go into a care home? It could be because they need specialist help and care that can only be given in a care home setting, or it could be there is a change of circumstance at home and they can no longer live there safely and well.
If your parent or relative is no longer able to make their own decisions then if you or someone else has power of attorney then you will need to make this decision on their behalf. Considerations about a care home include:
Type of care home: a nursing home provides medical/nursing care whilst a residential home provides care and support but not nursing care; you will need to consider the availability of specialist dementia care services, the qualifications and experience of the staff; activities and other services available.
Location of care home – should it be close to their home, friends and community, or perhaps closer to you as closest relatives;
Care home costs; dementia care is the most expensive, in the region of £1600 per week; there may be funding available from the NHS in the form of nursing care costs or in some circumstances NHS Continuing Care but this is based on underlying health issues and a diagnosis of dementia alone will not be sufficient to trigger this funding.
Advocating for people with dementia in care homes
Advocating on behalf of care home residents with dementia has been very important during the pandemic. There are a couple of excellent organisations that you might consider joining to help ensure that the rights of your relative can be protected in a care home.
Getting a dementia diagnosis
Dementia in the early stages can be hard to diagnose. The first port of call should be the GP to carry out initial cognitive assessments and/or refer your parent or relative to a memory clinic. Tests may include a Mini-mental state examination (MMSE), blood tests (to rule out other conditions) or brain scans such as an MRI.
A diagnosis of dementia is critical, so that you know what type of dementia you are actually dealing with, and to inform the types of care your parent may need both short and longer term. It will enable you to plan for the future, even if that future is a while away.
Power of Attorney and other legal matters
With a diagnosis of dementia comes the inevitability that in time your parent may no longer be able to make their own decisions; about how they live, how they spend their money etc. It is very important that they choose someone who can make decisions on their behalf for when the time comes. A lasting power of attorney will ensure that their wishes are respected and that all decisions about finance, health and well-being are being made in their best interests.
Care assessment for Dementia care options
Once you have a diagnosis, getting a care assessment from the local authority is the next step. This will determine what kind of care your parent needs (washing, dressing, food preparation etc), and importantly, with an associated financial assessment, how it will be funded. If your parent has more than £23,500 in assets (savings and cash, excluding the home) then currently they will be paying for all their own care. If under this, the local authority will pay some or all the costs.
Alongside a care assessment, a carers assessment should also be carried if you or a spouse/partner are their primary carer. This will also determine any carer funding available as well as other support such as respite care.
Funding Dementia Care
Unfortunately dementia care in your own home or in other settings is not free, unlike other diseases or illnesses. If your parent is funding their own care, then you should endeavour to start to make plans for how care will be paid for long-term should it be necessary.
First of all it is really worth ensuring that your parents are both receiving all the state benefits and funding available to them.
There are some options to consider including NHS Continuing Healthcare. This is care paid for by the NHS and will cover all care costs. However, it is based upon a primary healthcare need, and a diagnosis of dementia alone, will not suffice.