Building a care plan for a dementia patient at home

The Care Plan is a central part of dementia care, as it lays out everything carers, family members and medical professionals need to know about how a person with dementia would like to be treated and cared for, and the specifics of that treatment and care. 

If you have started caring for a loved one with dementia at home, you may be looking into the Care Plan and how to create this, so here, we are taking a closer look at what this is, what it should include, how to ensure continuity of care, what to do if your loved one does not agree to their Care Plan, how to arrange home care services or respite care, and what to do when your loved one’s condition worsens over time. 

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. So whatever questions you have about dementia care, we can help. 

Who puts a Care Plan together? 

There are several people who can do this, however in most cases the team involved in the person’s care – this is often community nurses, social workers and GPs – will assess the person’s situation and work together to create a plan that takes into account all of their medical and care needs. The family will also be involved in this planning process in order to bring a more personalised element and ensure it focuses on the individual rather than being a one-size-fits-all Care Plan.

What does a dementia Care Plan include? 

The document containing the dementia Care Plan covers a lot of ground, but should remain personalised to the individual it concerns. This means the exact details of what is contained in each Care Plan will be unique to the person and their condition. That said, there are a few elements you may notice in every Care Plan document, such as:

• Details about the person’s dementia condition, rate of progression and behavioural symptoms 
• Their preferences for care
• Their medical history
• An evaluation of their cognitive functioning
• Their physical health details 
• The goals and desired outcomes of the Care Plan, for example, if the person wants to maintain independence, this should be prioritised for as long as possible 
• Information about their medication management, including schedules, dosages and more
• Information about their life, character and personality – this is so important for person-centred care in order to ensure the person’s dignity is maintained and that they can trust and enjoy the company of their caregivers 
• Notes on subjects or things that can make the person upset, frustrated or angry 
• Strategies for managing challenging dementia-related behaviours
• Tracking their physical health, such as their vital signs, mobility and more 
• Any nutritional needs they have, such as deficiencies or foods they do and don’t like 
• Activities they enjoy, or that could help to stimulate their cognitive function
• Information about the person’s home to ensure they remain safe and comfortable there 
• Their preferences and wishes when it comes to their cultural needs, faith, and any other special considerations that will help them to feel comfortable 
• Information on support for family members and those caring for the person with dementia  
• Any necessary legal information, such as Power of Attorney documents 
• Regular reviews of the Care Plan’s effectiveness and suggestions for updates
• Contingency plans for any issues that may come up 
• Continuity plans, such as ensuring handovers are smooth and thorough 
• Plans for end-of-life care 

A dementia Care Plan is designed to be bespoke to the individual, adaptable as the person’s needs progress, and comprehensive so that everyone involved in the person’s care understands exactly what is needed, and what the person has asked for. 

How is home care arranged?

If home care is being implemented for your loved one as part of their Care Plan, then you may be wondering where to start when arranging this. Often having a conversation with the person’s GP is helpful as they can talk you through how this works, recommend any medical and care options that will help your loved one, and put you in touch with your local community healthcare team (regulated by Care Quality Commission) to arrange home care. 

A free Care Needs Assessment will usually be required, which means the person’s local social services team will come to their home and discuss what may be needed in terms of care and safety. Their recommendations could include things like carers, personal alarms, home adaptations, support groups, and more. They can also carry out a financial assessment to learn whether or not you are eligible for home care funding. 

If you do not go through the person’s GP first you can still arrange this by reaching out to the adult social services department of your local council. Or, if you or your loved one plans to independently fund their home care, you can bypass the Care Needs Assessment and contact your chosen home care agency or private carer to set this up without delay. 

You can find more details about what happens in the Care Needs Assessment and how to prepare for this in our article: The Care Needs Assessment 

Home care can be provided by:

• Family: Many people prefer to be looked after by a loved one as they feel more comfortable with them. If you have opted to care for your loved one either on a part-time or full-time basis, remember you could be eligible for a Carer’s Allowance to offer financial support, and you can look into respite care in order to give yourself necessary time off from caring responsibilities, whether for a holiday, special event, or just to recharge your batteries. Respite care offers many benefits to carers, so it is extremely helpful to be aware of the services available to you. 

• Private carers: Hiring a private carer can be helpful to give you full control over the care of your loved one, and find someone who can provide the necessary services within your budget. However, do keep in mind that hiring a private carer means you will become financially and legally responsible as their employer. 
• Agency carers: There are many agencies in the UK, such as Home Instead, offering paid-for home care options. Whether you need full-time, live-in care for things like mobility support, or just someone to pop in a few hours a week to help with personal care, an agency can provide bespoke care according to the Care Plan you have created. 

We have a dedicated article on this topic that you may find useful: How To Choose and Arrange Home Care Services

What happens when the person’s condition worsens? 

Dementia is a progressive disease that goes through several stages, from mild symptoms in the early stages, to worsening symptoms in the middle stages, and eventually will develop into severe dementia in the late stages. Every person’s condition will deteriorate at a different rate, and this could be based on factors like the specific type of dementia they have, their overall health and wellbeing, any other medical conditions they have, and more. 

Worsening symptoms in dementia are inevitable, and eventually you should be prepared for end-of-life care, which is required when someone is going through the final stages of the condition and requires specialist care to manage their pain and comfort as they approach the end of their life. 

The end-of-life care stage can last for several weeks or months depending on the person’s condition and the speed at which their health deteriorates, so it is difficult to plan for this, but important to try to do so. Ultimately, this time is about minimising symptoms, enabling them to die with dignity, and managing their pain. 

By this stage it is helpful to already have had discussions with your loved one about what they would like to happen in the event that they require end-of-life care, and an End of Life Care Pathway document may be created to ensure everyone involved in the person’s care is on the same page and understands what needs to happen in their final months, weeks and days. These plans also help to avoid situations where you need to guess what your loved one’s preferences might be or make decisions for them that you are not confident about.

You may find more helpful information on this topic in our article: Understanding The End Of Life Care Pathway

Building a Care Plan for a person with dementia who chooses to remain at home is a necessary and useful step in their care, which can help to set out all of the information for loved ones, caregivers and medical professionals to better understand the person’s needs and wishes. It also offers consistency and continuity of care from the early stages of dementia all the way through to end-of-life care. A Care Plan is a great opportunity for your loved one to have agency over their own care if they are in a position to be able to make choices about what is included in this plan, so the earlier you can involve them in this the better the outcome for everyone. 
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.