Living well with early stage dementia
Being diagnosed with dementia can be overwhelming and it can be difficult to know what support is available to you. Everyone experiences dementia differently, but there are services available and a range of information and advice that can help you live well following a dementia diagnosis.
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Where can I access support?
There is a lot of information and advice available for people who are living with dementia and many organisations who can help.
Who's who?
After a dementia diagnosis you will probably find yourself coming into contact with a lot of different professionals and services for
the first time. This can feel overwhelming and it might be difficult to understand who does what. The ‘who’s who’ guide below explains who you are likely to come into contact with and what for. You can use this as a quick and easy reference if you are feeling unsure about what someone does and why they might be involved.
- Community Psychiatric Nurses are mental health nurses who visit people in their homes. They provide practical advice and support for people living with dementia. They can also administer medicines and keep an eye on any side effects
- Dementia Advisors are a local point of contact for people living with dementia, their families and carers. They can help you keep active in the community, put you in touch with other people living with dementia and provide information and advice.
- Dementia Link Workers provide one to one support for people living with dementia, their families and carers. They provide information and advice and can help you plan for the future.
- Dietitians can diagnose and treat diet and nutrition difficulties. They give information and advice on food choices.
- District Nurses visit people in their homes and provide help on a range of health issues including wound care and supporting someone to manage problems with continence.
- GPs look after people’s general physical and mental health needs and can make referrals for specialist support if you need it.
- Occupational Therapists help people to live independently and do as much as they can in their daily lives. They can give advice on changes to your home that can make life easier and equipment that can help with daily activities. This might include equipment to help with memory.
- Physiotherapists can help if you have difficulties walking or have had falls. They provide advice on exercises that can improve strength and balance, and equipment to help with walking and moving around.
- Podiatrists treat foot conditions and problems. They give advice on how to look after feet and what types of shoes to wear.
- Social Workers assess and support people who have physical and mental health difficulties, people with disabilities and carers.
- Speech and Language Therapists support people who have difficulty with communication. They also help people with eating, drinking and swallowing.
Post diagnostic support
If you have a diagnosis of dementia, you should be able to access at least a year of post diagnostic support, usually from an Alzheimer Scotland Dementia Link Worker or Dementia Advisor. They are interested in what matters to you and will focus on what you feel you need support with. This might include help to understand dementia and manage the symptoms, assistance with practical things like claiming benefits, sorting out legal matters or discussing different care options for the future. You may want information about local groups for people living with dementia or ways you can continue doing activities you enjoy. You can feel reassured that if you have any questions, concerns or worries that there is someone you can contact who understands your situation.
For more information about post diagnostic support,call the Alzheimer Scotland Freephone Dementia Helpline: 0808 808 3000 (24 helpline) or visit www.alzscot.org.
Care Needs Assessment
At some point, most people living with dementia will need support to live comfortably and safely in their own home and community. You may need someone to keep an eye on you to keep yourself safe, maybe reminding you to lock doors at night or switch the oven off after cooking.
You have the right to request an assessment of your needs through your Council’s social work department or in some areas, through your local health board. A Social Worker, Occupational Therapist or other health professional will visit and ask you what help you need. The Council will consider if you would benefit from support, which might include care at home, a place in a day centre or making adaptions to your home. If you need help that is classed as personal or nursing care, this will be free. For other help, each Council can decide which services it will charge for, and what it will charge. If you have a carer, they have a separate right to request an assessment of their needs.
Social Care and Support Guides
For more information and advice around caring, benefits and support, read our Care and Support at Home: Assessment and Funding and Care and Support at Home: Practical Help guides.
Talk to Others
It can be useful to talk things through with your friends and family and explain how dementia is affecting you. You might be worried that if you tell them about your diagnosis they will treat you differently, but usually people find if they are open and honest, family and friends will be supportive.
Dementia groups are a good way to meet other people living with dementia. You can have a chat and share experiences with others. No matter what you are going through, there is probably someone who has been through the same thing and understands how you feel.
About Dementia
About Dementia runs a range of groups for people living with dementia, including online spaces for informal, friendly conversations. Visit the About Dementia page to find out more.
It is important to look after your physical and mental health. If you are finding things difficult or feeling stressed, anxious, tired or depressed, you should speak to your GP. Let them know how dementia is affecting you and tell them how you are feeling. There is a lot of support available so don’t be afraid to ask for help.
You may find it helpful to speak to a counsellor. Counselling gives you the opportunity to talk with someone who has the training and experince to support you. A counsellor will listen to you without judging you or your situation. Most counsellors offer online or phone sessions as well as face to face appointments. Your GP should be able to give you information about counselling services and may refer you for free support. The British Association for Counselling and Psychotherapy can can help you find qualified Counsellors in your area along with information about what they charge.
Contact British Association for Counselling and Psychotherapy
Call 01455 883300 or visit www.bacp.co.uk to find out about counselling support.
Dementia resources
Find out more about Age Scotland's work and services to support people affected by dementia.
