Caring for someone living with PSP or CBD

Supporting someone living with PSP or CBD as they approach daily activities can require adaptability and an understanding of the condition’s progression. As your loved ones’ physical, emotional and cognitive needs change, you may need to review what care and support are required to ensure it is provided at the right stage of progression.

Key aspects you can review include:

Routine and Structure

Try and establish a daily routine to provide consistency, which can be comforting for people living with a neurological condition.

Personal Care

As symptoms progress, where possible, assist with personal hygiene tasks, adapting techniques as needed to ensure comfort and dignity. It’s important to think about which tasks you feel comfortable handling and to recognise when you might need extra support, especially with more personal or physical aspects of care.

Eating and Nutrition

For people with limited dexterity, use adaptive utensils. Monitor dietary needs closely, as swallowing difficulties may develop.

Communication

Try and encourage the use of any remaining verbal or non-verbal communication aids. Speak to a Speech and Language Therapist about introducing tools like communication boards, voice banking or technology.

Regular Check-ups

Maintain regular appointments with neurologists and involve specialists like speech therapists and occupational therapists as needed.

Medication Management

Keep a detailed schedule for medications, understand potential side effects, and communicate with healthcare providers about any changes in condition.

Adapting your living environment can significantly improve safety and accessibility:

Remove Hazards

Where possible, modify your home by removing loose rugs, installing grab bars, and making hallways and rooms easy to navigate.

Adaptive Equipment

Consider tools like lifts, walk-in showers, and customised kitchen utensils to facilitate independence.

Emergency Plans

It is important to have clear, easy-to-follow emergency plans in place, with emergency contacts visible for quick reference. The PSPA “All About Me” form is a helpful tool that lets you share important details about the condition with any health professional involved in the person’s care. Download a copy here.

Your emotional wellbeing, as the carer, is often overshadowed by the focus on the person you care for. It’s important to acknowledge the psychological strain that comes with caregiving. Feelings of isolation, stress, and fatigue are common, and addressing these feelings is crucial:

Access to Professional Support

Engaging with mental health professionals can provide you with strategies to cope with stress and emotional turmoil. PSPA can offer support with managing your emotions by helping you to access counselling services. Please get in touch with the PSPA helpline.

Peer Support

Regular interaction with fellow carers through Support Groups can offer emotional solace and practical support. These groups can be a valuable resource for sharing experiences and coping strategies.

Helpline and Information Services

At PSPA, we offer a confidential telephone and email service as well as a variety of support that may help you with your caring role. Our team are here to provide emotional and practical support as well as signpost other valuable sources. Please find more details about our helpline here.

Maintaining your physical health is essential for the sustainability of caregiving:

Regular Exercise

Simple activities like walking or yoga can significantly improve your physical health and reduce stress.

Balanced Diet

Eating well helps maintain energy levels and supports overall health.

Rest and Respite

Ensuring enough rest is critical to prevent caregiver burnout. Doctors recommend that we get 7 to 9 hours of sleep per night; however, what we need depends on individuals, their age, their activity levels, health, environment, and responsibilities. If you find you need more sleep speak to your GP or another health professional. Caring for others can seriously affect both our ability to sleep and our ability to function well day to day. Taking regular breaks and allowing time for relaxation helps maintain both physical and mental wellbeing. Utilising respite care or sitting services, where a professional carer temporarily takes over, provides essential time off for self-care and rejuvenation, ensuring you can continue to provide quality support without becoming overwhelmed. The PSPA Support Grant can be provided to help with this.

Support networks can provide both practical help and a sense of community:

Online Carers Support Group

Participating in both online and in-person support groups can help you feel less alone and more understood. These groups provide a platform to connect with others in similar situations. Take a look at some of the support groups we run regularly – find them here.

Regional PSPA Support Groups

At PSPA, we provide regular opportunities for families to get together, share experiences and support each other. We offer Regional Support Groups for localised meetings every month or two months. In addition, each year we host a Family Day, providing a relaxed environment for you to connect with others, learn more about the conditions and symptom management, and take part in some fun activities. Find a Support Group near you, here, and learn more about our Family Days, here.

Accessing the right healthcare services involves understanding and coordinating multiple aspects of care. Here are some steps and expectations:

Initial Diagnosis and Specialist Referrals

Early consultation with neurologists and movement disorder specialists is vital since symptoms of PSP & CBD often overlap with other conditions. If your GP hasn’t already, you can request a referral to a local specialist.

Ongoing Healthcare Management

Regular follow-ups with healthcare providers are essential to adjust care plans as the condition progresses. Typically, your Consultant Neurologist will schedule a review appointment with you every six months or as things begin to change.

Multidisciplinary Team Coordination

To address the wide range of symptoms experienced by individuals with PSP & CBD, various specialists, such as speech therapists, occupational therapists, and physiotherapists, may be necessary. Not every area has a multidisciplinary team for people living with PSP or CBD. Check with your consultant or GP if you are unsure.

PSPA offers a variety of services designed to support you, your family member or friend diagnosed with PSP & CBD:

PSPA Helpline

This service provides a direct line to Helpline Care Navigators for information and support. Information on the Helpline is available here.

Support Groups

Both local and online Support Groups help you connect with others in similar situations, offering emotional and practical support. Find a Support Group in your region.

Information Resources

PSPA provides comprehensive resources, including guides and factsheets that can be really helpful for both you and healthcare professionals unfamiliar with PSP & CBD. Download publications and resource documents here.

Link Volunteer Service

This service offers personalised support to families, helping them navigate the challenges of living with PSP & CBD.

PSPA Support Grants

These grants help cover the costs of services and equipment that can improve the quality of life for those affected by PSP & CBD. Find out more information here.

Find out about all PSPA support services that are available here.

Additional support is available through various organisations:

Local Carer Organisations

These provide support, information, and sometimes respite services, helping you manage your responsibilities. Please be aware that some local carers organisations will carry out Carers Assessments. More information about this assessment can be found here.

Adult Social Care Services

This usually includes social workers, care managers, care coordinators and occupational therapists. They can offer a number of services, including a needs assessment for the person living with the condition, carers assessments, provision of equipment and guidance on other services.

Specialist Palliative Care Services

Based in a hospital, hospice or day hospice services, palliative care is provided by a team of health professionals with training and expertise in support for life-limiting conditions.

Other Organisations

A variety of local, regional and national organisations can offer guidance, information, support or funding to you and the person living with conditions like PSP & CBD. Follow this link to find out more about other useful organisations.

To help you manage your financial needs effectively so you can access support for yourself and your loved one, read through the following information:

Benefits

Try to familiarise yourself with the benefits that may be available to both yourself and the person you are caring for, such as Attendance Allowance, Personal Independence Payment, Carers Allowance, and Pension Credit. PSPA offers information on how to apply for these benefits and assists with its support grants. Download a guide here.

PSPA Support Grants

Our support grants can provide a one-off payment of up to £250 to help provide an item or service that can help maintain or improve the quality of life for the carer as well as the person living with the condition. Contact the PSPA helpline for information on how to apply.

Local Support

Engage with local councils and community organisations that offer additional financial support and resources tailored to the needs of you and those with PSP & CBD. Use the Government Local Council Finder for help with this.

Planning for the future when you are caring for someone with PSP & CBD can provide you with a sense of stability during a challenging time. It can also ensure that the wishes of the person living with the condition are honoured.

Power of Attorney

Setting up a power of attorney allows a designated individual to make decisions on behalf of the person with PSP or CBD should you be required to advocate for them. Understanding the types and implications of different power of attorney agreements is essential.

Advance Care Planning

Discussing and documenting end-of-life wishes and care preferences in advance can ensure that the individual’s choices are respected. Tools like living wills or advance directives are vital in these preparations. PSPA has partnered with FreeWills to provide you with the opportunity to make your fully comprehensive, legally binding will for free – discover more about this service here.